Duivenvoorden, H.J.

Motivation and treatment engagement intervention trial (MotivaTe-IT): The effects of motivation feedback to clinicians on treatment engagement in patients with severe mental illness (Article)

2012-11-24T00:00:00Z

Background: Treatment disengagement and non-completion poses a major problem for the successful treatment of patients with severe mental illness. Motivation for treatment has long been proposed as a major determinant of treatment engagement, but exact mechanisms remain unclear. This current study serves three purposes: 1) to determine whether a feedback intervention based on the patients' motivation for treatment is effective at improving treatment engagement (TE) of severe mentally ill patients in outpatient psychiatric treatment, 2) to gather insight into motivational processes and possible mechanisms regarding treatment motivation (TM) and TE in this patient population and 3) to determine which of three theories of motivation is most plausible for the dynamics of TM and TE in this population.Methods/design: The Motivation and Treatment Engagement Intervention Trial (MotivaTe-IT) is a multi-center cluster randomized trial investigating the effectiveness of feedback generated by clinicians regarding their patients' treatment motivation upon the patients' TE. The primary outcome is the patients' TE. Secondary outcomes are TM, psychosocial functioning and quality of life. Patients whose clinicians generate monthly motivation feedback (additional to treatment as usual) will be compared to patients who receive treatment as usual. An estimated 350 patients, aged 18 to 65 years, with psychotic disorders and/or severe personality disorders will be recruited from outpatient community mental health care. The randomization will be performed by a computerized randomization program, with an allocation ratio of 1:1 (team vs. team or clinician vs. clinician) and patients, but not clinicians, will be blind to treatment allocation at baseline assessment. Due to the nature of the trial, follow-up assessment can not be blinded.Discussion: The current study can provide important insights regarding motivational processes and the way in which motivation influences the treatment engagement and clinical outcomes. The identification of possible mechanisms through which changes in the outcomes occur, offers a tool for the development of more effective future interventions to improve TM and TE.Trial registration: Current Controlled Trials NTR2968.

Assessing nonacceptance of the facial appearance in adult patients after complete treatment of their rare facial cleft (Article)

2012-08-01T00:00:00Z

Background Treatment of patients with severe congenital facial disfigurements is aimed at restoring an aesthetic and functional balance. Besides an adequate level of satisfaction, an individual's acceptance of facial appearance is important to achieve because nonacceptance is thought to lead to daily psychological struggles. This study objectified the prevalence of nonacceptance among adult patients treated for their severe facial clefts, evaluated risk factors, and developed a screening tool. Methods The study included 59 adults with completed treatment for their severe facial cleft. All the patients underwent a semistructured in-depth interview and filled out the Body Cathexis Scale. Results Nonacceptance of facial appearance was experienced by 44 % of the patients. Of the nonaccepting patients, 72 % experienced difficulties in everyday activities related to their appearance versus 35 % of the accepting patients. Acceptance did not correlate with objective severity or bullying in the past. Risk factors for nonacceptance were high self-perceived visibility, a troublesome puberty period, and an emotion-focused coping strategy. Also, the presence of functional problems was shown to be highly associated. Conclusions The objective severity of the residual deformity did not correlate with the patients' acceptance of their facial appearance, but the self-perceived visibility did correlate. The process of nonacceptance resembles the process seen in patients with body dysmorphic disorders. Surgical treatment is no guarantee for an improvement in acceptance and is therefore discouraged for patients who match the risk factors for nonacceptance unless it solves a functional problem. The authors therefore recommend screening patients for nonacceptance and considering psychological treatment before surgery is performed. Level of Evidence III This journal requires that authors assign a level of evidence to each article. For a full description of these Evidence-Based Medicine ratings, please refer to the Table of Contents or the online Instructions to Authors at www.springer.com/00266.

Neonatal Extra Corporeal Membrane Oxygenation: Impaired health at five years of age (Article)

2012-06-27T00:00:00Z

Objective: Children treated with neonatal Extra Corporeal Membrane Oxygenation (ECMO) may show physical and mental morbidity at later age. We compared the health-related quality of life (HRQOL) of these children with normative data. Design: Prospective longitudinal follow-up study. Setting: Outpatient clinic of a III level university hospital. Patients: 95 five-year-olds who had received neonatal ECMO support between January 1999 and December 2005. Interventions: None. Measurements: The Pediatric Quality of Life Inventory (PedsQL) was administered at 5 years of age. Main results: The mothers (n=74) as proxy-reporters assigned significantly lower HRQOL scores for their children than did the parents in the healthy reference group for the total functioning scale of the PedsQL (mean difference:8.1, p<0.001). Mothers’ scores for 31 children (42%) were indicative of impaired HRQOL (≥-1 SD below the reference norm). The children (n=78) themselves scored significantly lower than did their healthy peers on total functioning (mean difference:11.0, p<0.001). Thirty-two children (41%) indicated an impaired HRQOL themselves. For the mother proxy-reports, duration of ECMO support (R2=0.009, p=0.010) and the presence of chronic lung disease (R2=0.133, p=0.002) were negatively related to total functioning. Children with a disabled health status for neuromotor functioning, maximum exercise capacity, behavior and cognitive functioning at five years of age had a higher odds ratio of also having a lower HRQOL. Health status had no influence on reported emotional functioning. Conclusions: Overall, children treated with ECMO in the neonatal period reported low HRQOL at 5 years of age. Because only emotional HRQOL was not associated with health status, the PedsQL might be a measure of health status rather than of HRQOL. In contrast with conclusions from others we found that 5-year-old children might be too young to rate their own HRQOL.

The profile of executive function in very preterm children at 4 to 12 years (Article)

2012-03-01T00:00:00Z

Aim To examine executive functioning in very preterm (gestational age ≤30wks) children at 4 to 12years of age. Method Two-hundred very preterm (106 males, 94 females; mean gestational age 28.1wks, SD 1.4; mean age 8y 2mo, SD 2y 6mo) and 230 term children (106 males, 124 females; mean gestational age 39.9wks, SD 1.2; mean age 8y 4mo, SD 2y 3mo) without severe disabilities, born between 1996 and 2004, were assessed on an executive function battery comprising response inhibition, interference control, switching, verbal fluency, verbal and spatial working memory, and planning. Multiple regression analyses examined group differences while adjusting for effects of parental education, age, sex, and speed indices. Results Relative to children born at term, very preterm children had significant (ps<0.02; where psrepresents p-values) deficits in verbal fluency (0.5 standardized mean differences [SMD]), response inhibition (0.4 SMD), planning (0.4 SMD), and verbal and spatial working memory (0.3 SMD), independent of slow and highly fluctuating processing speed. A significant group by age interaction indicated that group differences for response inhibition decreased between 4 and 12years. Interpretation Very preterm birth is associated with a profile of affected and non-affected executive functions independent of impaired speed. Deficits are of small to moderate magnitude and persist over time, except for response inhibition for which very preterm children catch up with peers. © The Authors. Developmental Medicine & Child Neurology

Long-term psychological functioning of adults with severe congenital facial disfigurement (Article)

2012-01-01T00:00:00Z

BACKGROUND: In adults with severe congenital facial disfigurement, assessment of long-term psychological impact remains limited. This study determines the long-term psychological functioning in these patients and evaluates differences compared with patients with acquired facial disfigurement and a non-facially disfigured reference group. Also explored is the extent to which psychological functioning of the congenital group is related to satisfaction with facial appearance, fear of negative appearance evaluation by others, self-esteem, and severity of the facial deformity. METHODS: Fifty-nine adults with severe congenital facial disfigurement, 59 adults with a traumatically acquired facial deformity in adulthood, and 120 non-facially disfigured adults completed standardized psychological, physical, and demographic questionnaires, including the Fear of Negative Appearance Evaluation Scale, the Rosenberg Self-Esteem Scale, the Hospital Anxiety and Depression Scale, the Achenbach Adult Self-Report, the 36-Item Short-Form Health Survey, and a visual analogue scale. RESULTS: Adults with severe congenital facial disfigurement had relatively normal psychological functioning but appeared more prone to internalizing problems than the non-facially disfigured adults. Compared with patients with an acquired facial deformity, the congenital group displayed fewer problems on the physical component score of quality of life only. Satisfaction with facial appearance, fear of negative appearance evaluation, and self-esteem were good predictors of the different aspects of psychological functioning, with the exception of the physical component score of quality of life. CONCLUSIONS: Improving satisfaction with facial appearance (by surgery), enhancing self-esteem, or lowering fear of negative appearance evaluation (by psychological support) may enhance long-term psychological functioning. Future research should focus on the individual patient and risk factors for maladjustment. Copyright

Psychological distress in women at risk for hereditary breast cancer: The role of family communication and perceived social support (Article)

2011-12-01T00:00:00Z

Background: Hereditary breast cancer has a profound impact on individual family members and on their mutual communication and interactions. The way at-risk women cope with the threat of hereditary breast cancer may depend on the quality of family communication about hereditary breast cancer and on the perceived social support from family and friends. Objective: To examine the associations of family communication and social support with long-term psychological distress in a group of women at risk for hereditary breast cancer, who opted either for regular breast surveillance or prophylactic surgery. Methods: The study cohort consisted of 222 women at risk for hereditary breast cancer, who previously participated in a study on the psychological consequences of either regular breast cancer surveillance or prophylactic surgery. General and breast cancer specific distress, hereditary cancer-related family communication, perceived social support, and demographics were assessed. Results: Using structural equation modelling, we found that open communication about hereditary cancer within the family was associated with less general and breast cancer specific distress. In addition, perceived support from family and friends was indirectly associated with less general and breast cancer-specific distress through open communication within the family. Discussion: These findings indicate that family communication and perceived social support from friends and family are of paramount importance in the long-term adaptation to being at risk for hereditary breast cancer. Attention for these issues needs to be incorporated in the care of women at risk for hereditary breast cancer. Copyright

The contribution of self-esteem and self-concept in psychological distress in women at risk of hereditary breast cancer (Article)

2011-11-01T00:00:00Z

Objective: Clarification of the role of several aspects of self-concept regarding psychological distress in women at risk of hereditary breast cancer will help to target counselling and psychosocial interventions more appropriately. In this study, we aimed (1) to examine the role of general self-esteem and specific aspects of self-concept (i.e. stigma, vulnerability, and mastery) in psychological distress in women at risk of hereditary breast cancer and (2) to compare the relative importance of these self-concept aspects in psychological distress in women with low versus high self-esteem. Methods: General and breast-cancer-specific distress, self-esteem, self-concept, and demographics were assessed in 246 women being at risk of hereditary breast cancer, who opted either for regular breast surveillance or prophylactic surgery. Results: In the total study group, self-esteem was negatively associated with general distress. Furthermore, feeling stigmatized was strongly associated with more breast-cancer-specific distress, and to a lesser degree with general distress. In women with low-self esteem, feelings of stigmatization were strongly associated with higher levels of both breast-cancer-specific and general distress, while a sense of mastery was associated with less general distress. For women with high self-esteem, feelings of both stigmatization and vulnerability were associated with more breast-cancer-specific distress, whereas there were no significant associations with general distress. Discussion: Psychosocial interventions or support groups for women at risk of hereditary breast cancer should focus on self-esteem and feelings of stigmatization and isolation, and consequently tailor the interventions on specific items for respective women.

Survivors of septic shock caused by Neisseria meningitidis in childhood: Psychosocial outcomes in young adulthood (Article)

2011-11-01T00:00:00Z

Objective: To investigate long-term psychosocial outcomes in young adults who survived septic shock caused by Neisseria meningitidis (meningococcal septic shock) during childhood. Design: A cross-sectional study. Setting: The psychological investigation took place in the department of Child and Adolescent Psychiatry of the Erasmus MC-Sophia Children's Hospital. Patients: All consecutive surviving patients with meningococcal septic shock requiring intensive care treatment at the pediatric intensive care unit between 1988 and 2001. Intervention: To explore biographical characteristics (such as living conditions, educational, occupational, and marital status) and illness-related physical or social consequences a structured interview was used. To assess intellectual functioning the Groninger Intelligence Test 2 was used and to assess behavioral/emotional problems, the Adult Self-Report was used. Measurements and Main Results: Fifty-eight of 83 eligible septic shock survivors were evaluated (response rate: 70%). The patients were 16-31 yrs old at time of follow-up (median age: 21 yrs old). These patients had had meningococcal septic shock before 18 yrs of age. Median follow-up interval was 13 yrs, with a range of 4 to 16 yrs. For the vast majority of meningococcal septic shock patients, outcomes on biographical characteristics, intellectual functioning, and levels of behavioral/emotional problems were comparable to those of reference groups. A minority (5% to 20%) still report illness-related physical or social consequences, behavioral and emotional problems, and lower intellectual functioning. Conclusions: Despite favorable outcomes for the majority of meningococcal septic shock patients in the long term, an important minority (5% to 20%) still struggles with ongoing problems as to behavioral/emotional problems, intellectual functioning, biographical characteristics, and illness-related physical or social consequences.

The quick motor function test: a new tool to rate clinical severity and motor function in Pompe patients (Article)

2011-09-13T00:00:00Z

Pompe disease is a lysosomal storage disorder characterized by progressive muscle weakness. With the emergence of new treatment options, psychometrically robust outcome measures are needed to monitor patients' clinical status. We constructed a motor function test that is easy and quick to use. The Quick Motor Function Test (QMFT) was constructed on the basis of the clinical expertise of several physicians involved in the care of Pompe patients; the Gross Motor Function Measure and the IPA/Erasmus MC Pompe survey. The test comprises 16 items. Validity and test reliability were determined in a cohort of 91 Pompe patients (5 to 76 years of age). In addition, responsiveness of the scale to changes in clinical condition over time was examined in a subgroup of 18 patients receiving treatment and 23 untreated patients. Interrater and intrarater reliabilities were good (intraclass correlation coefficients: 0.78 to 0.98 and 0.76 to 0.98). The test correlated strongly with proximal muscle strength assessed by hand held dynamometry and manual muscle testing (rs= 0.81, rs=0.89), and showed significant differences between patient groups with different disease severities. A clinical-empirical exploration to assess responsiveness showed promising results, albeit it should be repeated in a larger group of patients. In conclusion, the Quick Motor Function Test can reliably rate clinical severity and motor function in children and adults with Pompe disease.

Why do patients with schizophrenia who Have poor insight still take antipsychotics? Memory deficits as moderators between adherence belief and behavior (Article)

2011-09-01T00:00:00Z

While lack of insight is often predictive of antipsychotic nonadherence, some inconsistency in the literature remains unexplained. Verbal memory deficits may moderate the association between insight and adherence. Based on cross-sectional data, outpatients treated with antipsychotics for a psychotic disorder were divided into those with good (n=53) and poor (n=59) memory. Poor insight predicted nonadherence only among the subgroup with relatively good memory (r=0.43; P<0.01), but had no effect in the subgroup with worse memory (r=0.08; ns). Structural equation modelling revealed significant moderation (χ=4.72; df=1; P<0.05), which means that a significantly better model fit was found by allowing the analysis to differentiate between the two memory groups. Thus, poor insight was only associated with poor medication adherence among patients with relatively good memory. We speculate that memory deficits commonly associated with schizophrenia may partly explain why poor insight does not always lead to poor medication adherence. Copyright

Differential effectiveness of antipsychotics in borderline personality disorder: Meta-analyses of placebo-controlled, randomized clinical trials on symptomatic outcome domains (Article)

2011-08-01T00:00:00Z

Objective: In clinical practice, antipsychotic drugs are widely used in borderline personality disorder (BPD). To evaluate current pharmacological treatment algorithms and guidelines for BPD, the authors reviewed and meta-analyzed studies on the effectiveness of antipsychotics on specific symptom domains in BPD. METHODS:: The literature was searched for placebo-controlled, randomized clinical trials (PC-RCTs) on the effectiveness of antipsychotics regarding cognitive perceptual symptoms, impulsive behavioral dyscontrol, and affective dysregulation (with subdomains depressed mood, anxiety, anger, and mood lability) in BPD. Studies whose primary emphasis was on the treatment of Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition schizotypal personality disorder or Axis I disorders were excluded. Results: Meta-analyses were conducted using 11 retrieved studies including 1152 borderline patients. Antipsychotics have a significant effect on cognitive perceptual symptoms (9 PC-RCTs; standardized mean difference [SMD], 0.23) and mood lability (5 PC-RCTs; SMD, 0.20) as well as on global functioning (8 PC-RCTs; SMD, 0.25), but these effects have to be qualified as small. Antipsychotics have a more pronounced effect on anger (9 PC-RCTs; SMD, 0.39). Antipsychotics did not have a significant effect on impulsive behavioral dyscontrol, depressed mood, and anxiety in BPD. Conclusion: Drug therapy tailored to well-defined symptom domains can have beneficial effects in BPD. At short term, antipsychotics can have significant effects on cognitive-perceptual symptoms, anger, and mood lability, but the wide and long-term use of antipsychotics in these patients remains controversial. The findings from this study raise questions on current pharmacological algorithms and clinical guidelines.

Work-related critical incidents in hospital-based health care providers and the risk of post-traumatic stress symptoms, anxiety, and depression: A meta-analysis (Article)

2011-07-01T00:00:00Z

This meta-analysis reviewed existing data on the impact of work-related critical incidents in hospital-based health care professionals. Work-related critical incidents may induce post-traumatic stress symptoms or even post-traumatic stress disorder (PTSD), anxiety, and depression and may negatively affect health care practitioners' behaviors toward patients. Nurses and doctors often cope by working part time or switching jobs. Hospital administrators and health care practitioners themselves may underestimate the effects of work-related critical incidents. Relevant online databases were searched for original research published from inception to 2009 and manual searches of the Journal of Traumatic Stress, reference lists, and the European Traumatic Stress Research Database were conducted. Two researchers independently decided on inclusion and study quality. Effect sizes were estimated using standardized mean differences with 95% confidence intervals. Consistency was evaluated, using the I2-statistic. Meta-analysis was performed using the random effects model. Eleven studies, which included 3866 participants, evaluated the relationship between work-related critical incidents and post-traumatic stress symptoms. Six of these studies, which included 1695 participants, also reported on the relationship between work-related critical incidents and symptoms of anxiety and depression. Heterogeneity among studies was high and could not be accounted for by study quality, character of the incident, or timing of data collection. Pooled effect sizes for the impact of work-related critical incidents on post-traumatic stress symptoms, anxiety, and depression were small to medium. Remarkably, the effect was more pronounced in the longer than in the shorter term. In conclusion, this meta-analysis supports the hypothesis that work-related critical incidents are positively related to post-traumatic stress symptoms, anxiety, and depression in hospital-based health care professionals. Health care workers and their supervisors should be aware of the harmful effects of critical incidents and take preventive measures.

The COMFORT-Behavior scale is useful to assess pain and distress in 0- to 3-year-old children with Down syndrome (Article)

2011-06-02T00:00:00Z

Many pediatric intensive care units use the COMFORT-Behavior scale (COMFORT-B) to assess pain in 0- to 3-year-old children. The objective of this study was to determine whether this scale is also valid for the assessment of pain in 0- to 3-year-old children with Down syndrome. These children often undergo cardiac or intestinal surgery early in life and therefore admission to a pediatric intensive care unit. Seventy-six patients with Down syndrome were included and 466 without Down syndrome. Pain was regularly assessed with the COMFORT-B scale and the pain Numeric Rating Scale (NRS). For either group, confirmatory factor analyses revealed a 1-factor model. Internal consistency between COMFORT-B items was good (Cronbach's α = 0.84-0.87). Cutoff values for the COMFORT-B set at 17 or higher discriminated between pain (NRS pain of 4 or higher) and no pain (NRS pain below 4) in both groups. We concluded that the COMFORT-B scale is also valid for 0- to 3-year-old children with Down syndrome. This makes it even more useful in the pediatric intensive care unit setting, doing away with the need to apply another instrument for those children younger than 3.

Long-term effects of routine morphine infusion in mechanically ventilated neonates on children's functioning: Five-year follow-up of a randomized controlled trial (Article)

2011-06-01T00:00:00Z

Newborns on ventilatory support often receive morphine to induce analgesia. Animal experiments suggest that this may impair subsequent cognitive and behavioral development. There are sparse human data on long-term effects of neonatal morphine. We aimed to investigate the effects of continuous morphine administered in the neonatal period on the child's functioning. We conducted a follow-up study among 5-year-olds who, as mechanically ventilated neonates, had participated in a placebo-controlled trial on effects of morphine administration on pain and neurologic outcome. They were now tested on intelligence, visual motor integration, behavior, chronic pain, and health-related quality of life. Univariate analyses showed significantly lower overall intelligence quotient (IQ) scores for children who earlier had received morphine, that is, mean 94 (SD 14.5) versus 100 (SD 12.9) for those who received placebo (P = 0.049). Other between-group differences in outcomes were not found. The statistical difference disappeared after correction for treatment condition, open-label morphine consumption over the first 28 days, and a propensity score for clinically relevant co-variables in multiple regression analyses. However, scores on one IQ subtest, "visual analysis," were significantly negatively related to having received morphine and to open-label morphine consumption the first 28 days. The finding of a significant effect of morphine on the "visual analysis" IQ subtest calls for follow-up at a later age focusing on the higher-order neurocognitive functions. Morphine received in the neonatal period has negative effects on the child's cognitive functioning at the age of 5 years which warrants follow-up at a later age.

Fatigue in spinocerebellar ataxia: Patient self-assessment of an early and disabling symptom (Article)

2011-03-15T00:00:00Z

Objective: To identify the prevalence and severity of fatigue and predicting factors for severe fatigue in autosomal dominant spinocerebellar ataxia (SCA). Methods: We studied a cross-section of 123 patients with SCA. Six functional scales were used in a self-assessment: the Fatigue Severity Scale (FSS); the Beck Depression Inventory (BDI); the Rotterdam Handicap Scale (RHS); the Short Form-36 health survey, distinguishing a norm-based physical and mental component score (Nb-PCS and Nb-MCS); the Pittsburgh Sleep Quality Index (PSQI); and the Epworth Sleepiness Scale (ESS). A subset of 58 patients was clinically evaluated, measuring severity of ataxia with the Scale for the Assessment and Rating of Ataxia and cognitive functioning with the Mini-Mental State Examination. Results: Severe fatigue (FSS ≥5) was present in 69% of patients and FSS value correlated with the scores on RHS, Nb-PCS, Nb-MCS, BDI, PSQI, and ESS. There was no relation with disease duration, gender, or medication use. Multivariate analysis revealed that Nb-PCS and BDI were the best independent predictors for severe fatigue. Interestingly, the presence of visual symptoms was related to FSS value in the clinically evaluated subgroup. Conclusion: Fatigue is a severe and disabling symptom in adult patients with SCA, even early in the course of disease. Physical functioning and depression are the strongest predictors of fatigue. In treatment strategies, all treatable factors for fatigue should be addressed, especially depression, visual symptoms, and sleeping disorders.

Pathways leading to atherosclerosis: A structural equation modeling approach in young adults (Article)

2011-02-01T00:00:00Z

Several risk factors of cardiovascular diseases have been studied using direct association measures. Because the incidence of obesity and cardiovascular diseases is rising, it is important to correctly model these risk factors involved in development of cardiovascular diseases. Until now, statistical methods lacked to achieve this goal because of complex interrelationships involved. Structural Equation Modeling (SEM) is an advanced statistical technique that enables solving this issue. The aims of this study were to investigate whether SEM could unravel pathways involved in cardiovascular diseases and to visualize these pathways in a model. In 322 healthy participants of the PROGRAM (PROgramming factors for GRowth And Metabolism) study, 18 to 24 years of age, we explored pathways leading to atherosclerosis measured by carotid intima-media thickness. Using SEM, we were able to model these pathways for males and females using body fat percentage, serum lipid levels, and blood pressure. We are the first to present a model of complex direct and indirect effects of fat mass leading to atherosclerosis using SEM. Both male and female path-model had an excellent fit. Fat mass had a significant effect on carotid intima-media thickness through various pathways, with the largest effect size on carotid intima-media thickness via blood pressure. SEM showed that the pathways differed between males and females, with a larger effect of serum lipids on carotid intima-media thickness in males. In conclusion, SEM is suitable in identifying models to unravel potential causal pathways in complex origins of diseases. We present a model involving several pathways, showing that fat mass has an influence on risk factors for atherosclerosis, already at 21 years of age.

Differences in the perceptions of parents and healthcare professionals on pediatric intensive care practices (Article)

2011-01-01T00:00:00Z

OBJECTIVE:: To explore similarities and differences in perceptions on pediatric intensive care practices between parents and staff by using data from two studies. DESIGN:: A two-round Delphi method among nurses and physicians followed by an empiric survey among parents. SETTINGS:: Pediatric intensive care units at eight university medical centers. SUBJECTS:: Parents whose child has been admitted to a pediatric intensive care unit, nurses, and physicians. INTERVENTIONS:: None. MEASUREMENTS AND MAIN RESULTS:: Outcome measures were 74 satisfaction-with-care items divided into five domains: 1) information; 2) care and cure; 3) organization; 4) parental participation; and 5) professional attitude. The Delphi study was completed by 218 nurses and 46 physicians and the survey by 559 of 1042 (54%) parents. Parents rated 31 items more important than the professionals based on the standardized mean difference (Cohen's d, 0.21-1.18, p < .003). Ten of these were related to information provision. Information on the effects of medication had the largest effect size (Cohen's d 1.18, p = .001). Correct medication administration by professionals was also rated significantly more important by parents (Cohen's d 0.64, p = .001). The professionals rated 12 items more important than the parents (Cohen's d -0.23 to -0.73, p < .005), including three about multicultural care. Significant differences remained on two of the three multicultural care items when the Dutch (n = 483) and non-Dutch parents (n = 76) were separately compared with professionals. On the domain level, parents rated the domains information and parental participation more important than the professionals (Cohen's d 0.36 and 0.26, p = .001). CONCLUSIONS:: Compared with the parents' perceptions, nurses and physicians undervalued a substantial number of pediatric intensive care unit care items. This finding may reflect a gap in the understanding of parental experiences as well as incongruity in recognizing the needs of parents.

Treatment-disrupting behaviors during psychotherapy of patients with personality disorders: The predictive power of psychodynamic personality diagnosis (Article)

2011-01-01T00:00:00Z

Background. Behavioral dyscontrol and violations of treatment contracts are serious clinical problems during psychotherapy, especially in treating patients with personality disorders. However, little is known about predictors of these treatment-interfering phenomena. Objective. To identify psychodynamic personality characteristics that can interfere with the psychotherapy process as indicated by treatment-disrupting behaviors. Methods. Sociodemographic characteristics, descriptive psychiatric diagnoses, and psycho-dynamic characteristics were assessed in 89 inpatients with personality disorders in psychotherapeutic treatment. Psychodynamic charac teristics were assessed with the Develop mental Profile (DP). DP variables were used to predict impulsive acts, anger outbursts, para-suicidal behaviors, and contract violations. Incremental value was established. Results. In this sample, 4 out of 5 patients engaged in treatment-interfering behaviors during the first 3 months of therapy. In general, treatment-disrupting behaviors were not predicted by baseline DSM-IV Axis I or II disorders. In contrast, impulsive behaviors, anger outbursts, and contract violations were significantly predicted by psychodynamic variables, especially the DP levels Fragmentation and Egocentricity. DP variables accounted for an incremental predictive value of 23% for treatment-disrupting behaviors, over and above demographics and descriptive diagnoses. Para-suicidal gestures were not predicted by either DSM-IV diagnoses or psychodynamic variables. Conclusion. Psychodynamic personality variables significantly predicted impulsive behaviors, outbursts of anger, and treatment contract violations during psychotherapeutic treatment. The amount of explained variance and incremental value was substantial. These findings support the relevance of psychodynamic assessment in clinical practice. Copyright

Distress in partners of high-risk women undergoing breast cancer surveillance (Article)

2010-12-01T00:00:00Z

Background: Partners are an importance source of support for women at risk for hereditary breast cancer. The impact of regular breast cancer surveillance in at-risk women on psychological distress in the partners of these women is unknown. This study aimed to (1) examine the levels and courses of psychological distress of partners and high-risk women around breast cancer surveillance appointments at the clinic, (2) to explore the relationship between partners' and women's distress, and (3) to identify factors that were associated with distress in partners. Methods: Partners of 77 high-risk women adhering to breast cancer surveillance, and participating in a psychological follow-up study, completed questionnaires measuring psychological distress 2 months before (T0), on the day of (T1) and 1 to 4 weeks after (T2) two consecutive biannual appointments for the women at the clinic. Results: Partners' breast cancer-specific distress was positively related to the women's cancer-specific distress prior to breast cancer surveillance. Fatherhood and affective risk perception were positively associated with distress in partners. Conclusions: Our findings indicate that the psychological distress associated with stressful waiting for the breast cancer surveillance appointment, and - after the appointment - for the results, is an interpersonal experience, which is shared within the couple. These findings underscore the importance of involving partners in the clinical interventions for high-risk women. Clinicians should address the affective risk perception of partners, i.e. how they experience the increased breast cancer risk of the woman.

Medium-dose riboflavin as a prophylactic agent in children with migraine: A preliminary placebo-controlled, randomised, double-blind, cross-over trial (Article)

2010-12-01T00:00:00Z

Background: Riboflavin seems to have a promising effect on migraine in adults. The present study examines whether riboflavin has a prophylactic effect on migraine in children. Objective: To investigate whether riboflavin in a dosage of 50 mg/day has a prophylactic effect on migraine attacks in young children. Subjects and methods: This randomised, placebo-controlled, double-blind, cross-over trial included 42 children (aged 6-13 years) with migraine of whom 14 children were also suffering from tension-type headache. Following a 4-week baseline period, all children received placebo for 16 weeks then riboflavin for 16 weeks (or vice versa) with a washout period of 4 weeks in between. The primary outcome measure was reduction in mean frequency of migraine attacks and tension-type headache in the last 4 weeks at the end of the riboflavin and placebo phase, compared with the preceding baseline or wash-out period. Secondary outcome measures were mean severity and mean duration of migraine and tension-type headaches in the last 4 weeks at the end of the riboflavin and placebo phase, compared with the preceding baseline or wash-out period. Results: No significant difference in the reduction of mean frequency of migraine attacks in the last month of treatment was found between placebo and riboflavin (P=0.44). However, a significant difference in reduction of mean frequency of headaches with a tension-type phenotype was found in favour of the riboflavin treatment (P=0.04). Conclusions: In this group of children with migraine, there is no evidence that 50 mg riboflavin has a prophylactic effect on migraine attacks.We found some evidence that 50 mg riboflavin may have a prophylactic effect on interval headaches that may correspond to mild migraine attacks or tension-type headache attacks in children with migraine.

Turkish female immigrants' intentions to participate in preconception carrier screening for hemoglobinopathies in the Netherlands: An empirical study (Article)

2010-12-01T00:00:00Z

Background: Preconception carrier screening for hemoglobinopathies (HbPs) is debated in the Netherlands. Objectives: Intentions to participate in preconception carrier screening for HbPs as well as informed reproductive options were assessed in 109 Turkish female immigrants. Method: Participants completed a structured questionnaire. Results: 83.5% of 109 Turkish female immigrants intended to participate in preconception carrier screening. Intention to participate was related to the desire to reduce uncertainty about having offspring affected by HbPs, but not with socio-demographic variables, risk-estimation and worrying. If the tests concerning carrier status for HbPs were confirmative for both partners, 36.3% (n = 33) of the women with the intention of preconception carrier screening would refrain from getting children of their own, including 14.3% (n = 13) opting for adoption, 37.4% (n = 34) would decide to become pregnant and to opt for prenatal testing on HbPs. Finally, among 37.4% of the women opting for prenatal testing, 30.3% (n = 10) would terminate an affected pregnancy, 18.2% (n = 6) not and 51.5% (n = 17) could not decide (1 missing value). Conclusion: A large majority of Turkish female immigrants would participate in preconception carrier screening for HbPs. Copyright

Medical predictors for long-term behavioral and emotional outcomes in children and adolescents after invasive treatment of congenital heart disease (Article)

2010-11-01T00:00:00Z

Background: The aim of the study was to test the following: (1) the predictive value of medical variables for long-term parent-reported behavioral and emotional problems in children and adolescents who underwent invasive treatment of congenital heart disease in infancy and (2) the relationship between parental psychological distress and parental reports on problems in children. Methods: The Child Behavior Checklist was used to investigate to what extent behavioral and emotional problems in 7- to 17-year-old children with congenital heart disease can be predicted by the following: (1) medical history, (2) therapeutic intervention and direct postinterventional course, (3) long-term medical course, (4) present contact with physicians, and (5) present medical status. The General Health Questionnaire was used to assess parental distress (especially anxiety). Results: Higher Child Behavior Checklist total problems scores were predicted by cardiac medication before therapeutic intervention. Palliative intervention (Rashkind procedure) before therapeutic intervention was associated with more favorable scores on total problems and externalizing. Long-term maternal distress was significantly related to parent-reported problems in children. Conclusion: Long-term behavioral and emotional outcomes are only marginally predicted by medical variables. In counseling of children with congenital heart disease and their parents, attention should be paid to long-term maternal distress that has an influence on parent-reported problems in children.

Tailoring a cognitive behavioural model for unexplained physical symptoms to patient's perspective: A bottom-up approach (Article)

2010-11-01T00:00:00Z

The prevalence of unexplained physical symptoms (UPS) in primary care is at least 33%. Cognitive behavioural therapy has shown to be effective. Within cognitive behavioural therapy, three models can be distinguished: reattribution model, coping model and consequences model. The consequences model, labelling psychosocial stress in terms of consequences rather than as causes of UPS, has high acceptance among patients and is effective in academic medical care. This acceptance is lost when applied in primary care. To increase acceptance of the consequences model among patients in primary care, we tailor this model to patient's perspective by approaching the model from bottom-up instead of top-down. Subsequently, we use this tailored model in an easily accessible group training. We illustrate our approach using two illustrative cases.

Satisfaction with facial appearance and its determinants in adults with severe congenital facial disfigurement: A case-referent study (Article)

2010-10-01T00:00:00Z

Background: Patients with severe congenital facial disfigurement have a long track record of operations and hospital visits by the time they are 18 years old. The fact that their facial deformity is congenital may have an impact on how satisfied these patients are with their appearance. This study evaluated the level of satisfaction with facial appearance of congenital and of acquired facially disfigured adults, and explored demographic, physical and psychological determinants of this satisfaction. Differences compared with non-disfigured adults were examined. Methods: Fifty-nine adults with a rare facial cleft, 59 adults with a facial deformity traumatically acquired in adulthood, and a reference group of 201 non-disfigured adults completed standardised demographic, physical and psychological questionnaires. Results: The congenital and acquired groups did not differ significantly in the level of satisfaction with facial appearance, but both were significantly less satisfied than the reference group. In facially disfigured adults, level of education, number of affected facial parts and facial function were determinants of the level of satisfaction. High fear of negative appearance evaluation by others (FNAE) and low self-esteem (SE) were strong psychological determinants. Although FNAE was higher in both patient groups, SE was similar in all three groups. Conclusion: Satisfaction with facial appearance of individuals with a congenital or acquired facial deformity is similar and will seldom reach the level of satisfaction of non-disfigured persons. A combination of surgical correction (with attention for facial profile and restoring facial functions) and psychological help (to increase SE and lower FNAE) may improve patient satisfaction.

Perceptions of parents, nurses, and physicians on neonatal intensive care practices (Article)

2010-08-01T00:00:00Z

OBJECTIVE: To identify satisfaction with neonatal intensive care as viewed by parents and healthcare professionals and to explore similarities and differences between parents and healthcare professionals. STUDY DESIGN: A 3-round Delphi method to identify neonatal care issues (round 1) and to determine the importance of these issues (rounds 2 and 3) was conducted among nurses (n = 84) and physicians (n = 14), followed by an exploratory survey among parents (n = 259). Main outcome measures were 92 neonatal care-related items. RESULTS: Sixty-eight nurses and 13 physicians completed all 3 rounds. The first round yielded 419 neonatal care related statements, which were clustered into 92 items. The survey was completed by 148 (57%) parents. Parents rated 25 of 92 care items significantly higher than did the professionals (effect size of Cohen's d, 0.31 to 1.14, P

Perceptions of parents, nurses, and physicians on neonatal intensive care practices (Article)

2010-08-01T00:00:00Z

Construction and psychometric testing of the EMPATHIC questionnaire measuring parent satisfaction in the pediatric intensive care unit (Article)

2010-07-01T00:00:00Z

Abstract PURPOSE: To construct and test the reliability and validity of the EMpowerment of PArents in THe Intensive Care (EMPATHIC) questionnaire measuring parent satisfaction in the pediatric intensive care unit (PICU). METHODS: Structured development and psychometric testing of a parent satisfaction-with-care instrument with the results of two cohorts of parents (n = 2,046) from eight PICUs in the Netherlands. RESULTS: In the first cohort, 667/1,055 (63%) parents participated followed by 551/991 (56%) parents in the second cohort. The empirical structure of the instrument was established by confirmatory factor analysis with the first sample of parents confirming 65 statements within five theoretically conceptualized domains: information, care and cure, organization, parental participation, and professional attitude. The standardized factor loadings were greater than 0.40 in 63 statements. Cronbach's α, a measure of reliability, per domain ranged from 0.73 to 0.93 in both cohorts with no significant difference documenting the reliability over time. Beside rigorous content and face validity, the congruent validity of the instrument showed adequate correlation with four gold standard questions measuring overall satisfaction. The non-differential validity was confirmed with no significant differences between the population characteristics and the domains, except that parents with a child for a surgical admission were more satisfied on information issues. CONCLUSIONS: The final EMPATHIC questionnaire incorporates 65 statements. The empirical structure of the satisfaction statements and domains was satisfactory. The reliability and validity proved to be adequate. The EMPATHIC questionnaire is a valid quality performance indicator to measure quality of care as perceived by parents.

Measuring verbal and non-verbal communication in aphasia: Reliability, validity, and sensitivity to change of the scenario test (Article)

2010-07-01T00:00:00Z

Background: This study explores the psychometric qualities of the Scenario Test, a new test to assess daily-life communication in severe aphasia. The test is innovative in that it: (1) examines the effectiveness of verbal and non-verbal communication; and (2) assesses patients' communication in an interactive setting, with a supportive communication partner.Aims: To determine the reliability, validity, and sensitivity to change of the Scenario Test and discuss its clinical value.Methods & Procedures: The Scenario Test was administered to 122 persons with aphasia after stroke and to 25 non-aphasic controls. Analyses were performed for the entire group of persons with aphasia, as well as for a subgroup of persons unable to communicate verbally (n 43). Reliability (internal consistency, testretest reliability, inter-judge, and intra-judge reliability) and validity (internal validity, convergent validity, known-groups validity) and sensitivity to change were examined using standard psychometric methods.Outcomes & Results: The Scenario Test showed high levels of reliability. Internal consistency (Cronbach's α 0.96; item-rest correlations 0.580.82) and testretest reliability (ICC 0.98) were high. Agreement between judges in total scores was good, as indicated by the high inter- and intra-judge reliability (ICC 0.861.00). Agreement in scores on the individual items was also good (square-weighted κ values 0.610.92). The test demonstrated good levels of validity. A principal component analysis for categorical data identified two dimensions, interpreted as general communication and communicative creativity. Correlations with three other instruments measuring communication in aphasia, that is, Spontaneous Speech interview from the Aachen Aphasia Test (AAT), AmsterdamNijmegen Everyday Language Test (ANELT), and Communicative Effectiveness Index (CETI), were moderate to strong (0.500.85) suggesting good convergent validity. Group differences were observed between persons with aphasia and non-aphasic controls, as well as between persons with aphasia unable to use speech to convey information and those able to communicate verbally; this indicates good known-groups validity. The test was sensitive to changes in performance, measured over a period of 6 months.Conclusions & Implications: The data support the reliability and validity of the Scenario Test as an instrument for examining daily-life communication in aphasia. The test focuses on multimodal communication; its psychometric qualities enable future studies on the effect of Alternative and Augmentative Communication (AAC) training in aphasia.

Psychological well-being and sexarche in women with polycystic ovary syndrome (Article)

2010-06-01T00:00:00Z

Background The characteristics of polycystic ovary syndrome (PCOS) such as hyperandrogenism and anovulation can be highly stressful and might negatively affect psychological well-being and sexuality. The objective of this study was to evaluate the association between PCOS characteristics and psychological well-being as well as sexarche. Methods Patients (n = 1148) underwent standardized clinical evaluation. Psychological well-being was investigated in 480 patients with the Rosenberg self-esteem scale (RSES), the body cathexis scale (BCS) and the fear of negative appearance evaluation scale (FNAES). Sexarche was also assessed. Result SAmenorrhoea was associated with lower self-esteem (P = 0.03), greater fear of negative appearance evaluation (P = 0.01) and earlier sexarche (P= 0.004). Hyperandrogenism and acne were associated with poorer body satisfaction (P = 0.03, 0.02, respectively). Hirsutism and BMI were negatively associated with all psychological variables (RSES, P = 0.01; BCS, P = 0.05; FNAES, P = 0.02 and RSES, P = 0.03; BCS, P = 0.001; FNAES, P = 0.03, respectively). Conclusions Our Results suggest that menstrual irregularities might be related to sexarche. Moreover, this study stresses that the treatment of women with PCOS should notably focus on physical but also on psychological and sexual characteristics.

Qualities and health of lay trainers with migraine for behavioral attack prevention (Article)

2010-04-01T00:00:00Z

Objectives. - To evaluate the qualities of lay trainers with migraine and to quantify their self-management results. Background. - Little is known about the qualities of lay trainers with chronic diseases and the benefits for their own health. Methods. - Thirteen lay trainers (12 F, 1 M) completed a 3-step program that consisted of self-experience of a behavioral training (BT), providing BT to one fellow patient, and subsequently to a small group at home. Successful mastery of own migraine attacks was required for participation, and lay trainers received intensive guidance. Evaluation of the qualities of trainers took place post-BT by means of a specially constructed questionnaire. Their self-management was measured before self-experience of BT, post-BT, and at 6-month follow-up by a headache diary and questionnaires. Results. - The qualities of the 13 trainers were positively evaluated by 95 trainees, particularly their warmth, expertise, organization, explanation of BT, active control, and advice and guidance. Higher active control of lay trainers during the group sessions was significantly related to improvements on migraine frequency and internal locus of control in their trainees post-BT. Advice and guidance increased the likelihood of less attacks at follow-up and supportive encouragement promoted a higher internal locus of control. However, humor slightly increased the likelihood of more attacks post-BT, while fellowship and individualization negatively influenced internal locus of control. Lay trainers showed significantly more improvement in migraine frequency than their trainees at follow-up, as well as enhanced internal locus of control and quality of life. Conclusions. - Participation in a stepwise training program can produce capable trainers and may positively influence their own health. Lay trainers may be more motivated to enhance their self-management skills as they have to present the benefits to their trainees.

Effectiveness of pharmacotherapy for severe personality disorders: Meta-analyses of randomized controlled trials (Article)

2010-01-01T00:00:00Z

Context: There has been little systematic attempt to validate current pharmacologic treatment algorithms and guidelines for severe personality disorder. Objective: We evaluated studies on the effectiveness of psychoactive drugs on specific symptom domains for borderline and/or schizotypal personality disorder. Data sources: The literature was searched for placebo-controlled randomized clinical trials (PC-RCTs) on the effectiveness of psychopharmacologic drugs in personality disorder patients. The PubMed, PsychINFO, PiCarta, Cochrane, and Web of Science databases were searched using the search terms borderline personality, schizotypal personality, personality disorder, cluster A, cluster B, treatment, drug, pharmacotherapy, antipsychotic, antidepressant, mood stabilizer, effect, outcome, review, and meta-analysis for studies published between 1980 and December 2007, and references were identified from bibliographies from articles and books. Study selection: Placebo-controlled randomized clinical trials on the efficacy of antipsychotics, antidepressants, and mood stabilizers regarding cognitive-perceptual symptoms, impulsive-behavioral dyscontrol, and affective dysregulation (with subdomains depressed mood, anxiety, anger, and mood lability) were selected in patients with well defined borderline and/or schizotypal personality disorder. Studies whose primary emphasis was on the treatment of Axis I disorders were excluded. Meta-analyses were conducted using 21 retrieved studies. Results: Antipsychotics have a moderate effect on cognitive-perceptual symptoms (5 PC-RCTs; standardized mean difference [SMD] = 0.56) and a moderate to large effect on anger (4 PC-RCTs; SMD = 0.69). Antidepressants have no significant effect on impulsive-behavioral dyscontrol and depressed mood. They have a small but significant effect on anxiety (5 PC-RCTs; SMD = 0.30) and anger (4 PC-RCTs; SMD = 0.34). Mood stabilizers have a very large effect on impulsive-behavioral dyscontrol (6 PC-RCTs; SMD = 1.51) and anger (7 PC-RCTs; SMD = 1.33), a large effect on anxiety (3 PC-RCTs; SMD = 0.80), but a moderate effect on depressed mood (5 PC-RCTs; SMD = 0.55). Mood lability as an outcome measure was seldomly assessed. Mood stabilizers have a more pronounced effect on global functioning (3 PC-RCTs; SMD = 0.79) than have antipsychotics (5 PC-RCTs; SMD = 0.37). The effect of antidepressants on global functioning is negligible. Conclusions: Drug therapy tailored to welldefined symptom domains can have a beneficial effect on patients with severe personality disorder. The findings from this study raise questions on current pharmacologic algorithms.

Development of Preschool and Academic Skills in Children Born Very Preterm (Article)

2010-01-01T00:00:00Z

Objective: To examine performance in preschool and academic skills in very preterm (gestational age ≤30 weeks) and term-born comparison children aged 4 to 12 years. Study design: Very preterm children (n = 200; mean age, 8.2 ± 2.5 years) born between 1996 and 2004 were compared with 230 term-born children (mean age, 8.3 ± 2.3). The Dutch National Pupil Monitoring System was used to measure preschool numerical reasoning and early linguistics, and primary school simple and complex word reading, reading comprehension, spelling, and mathematics/arithmetic. With univariate analyses of variance, we assessed the effects of preterm birth on performance across grades and on grade retention. Results: In preschool, very preterm children performed comparably with term-born children in early linguistics, but perform more poorly (0.7 standard deviation [SD]) in numerical reasoning skills. In primary school, very preterm children scored 0.3 SD lower in complex word reading and 0.6 SD lower in mathematics/arithmetic, but performed comparably with peers in reading comprehension and spelling. They had a higher grade repeat rate (25.5%), although grade repeat did not improve their academic skills. Conclusions: Very preterm children do well in early linguistics, reading comprehension, and spelling, but have clinically significant deficits in numerical reasoning skills and mathematics/arithmetic, which persist with time.

Development of Preschool and Academic Skills in Children Born Very Preterm (Article)

2010-01-01T00:00:00Z

Differences in the perceptions of parents and healthcare professionals on pediatric intensive care practices (Article)

2010-01-01T00:00:00Z

Executive Function in Very Preterm Children at Early School Age (Article)

2009-10-01T00:00:00Z

We examined whether very preterm (≤30 weeks gestation) children at early school age have impairments in executive function (EF) independent of IQ and processing speed, and whether demographic and neonatal risk factors were associated with EF impairments. A consecutive sample of 50 children (27 boys and 23 girls) born very preterm (mean age = 5.9 years, SD = 0.4, mean gestational age = 28.0 weeks, SD = 1.4) was compared to a sample of 50 age-matched full-term controls (23 girls and 27 boys, mean age = 6.0 years, SD = 0.6) with respect to performance on a comprehensive EF battery, assessing the domains of inhibition, working memory, switching, verbal fluency, and concept generation. The very preterm group demonstrated poor performance compared to the controls on all EF domains, even after partialing out the effects of IQ. Processing speed was marginally related to EF. Analyses with demographic and neonatal risk factors showed maternal education and gestational age to be related to EF. This study adds to the emerging body of literature showing that very preterm birth is associated with EF impairments.

The Distress Thermometer assessed in women at risk of developing hereditary breast cancer (Article)

2009-10-01T00:00:00Z

Objectives: The Distress Thermometer (DT) is a promising instrument to get insight into distress experienced by cancer patients. At our Family Cancer Clinic the DT, including an adapted problem list, was completed by 100 women at increased risk of developing hereditary breast cancer (mean age 45.2 years; SD: 10.5). Additionally, the women filled in either the Hospital Anxiety and Depression Scale as psychological component (n=48) or the somatic subscale of the Symptom Checklist-90 as somatic component (n=50) to identify associations with the DT-score. Further, the women filled in an evaluation form. Results: The median score on the DT was 2 (range: 0-9). With regression analysis adjusted for age, the contribution of mood and somatic complaints, respectively, was investigated. The standardized regression coefficient for anxiety was 0.32 (ns), for depression 0.14 (ns) and for the somatic subscale 0.49 (p<0.001). The explained variance for anxiety and depression was 16%, and for somatic complaints 24%. The differences between the coefficients were not significant. Evaluation forms were returned by 73 women. In 50% of the cases, the physician had discussed the DT/problem list, which was appreciated by the majority of these women (80%). Sixty-two percent of the women would recommend the use of the DT for other patients. Conclusion: The use of the DT/problem list seems promising for the current population, and was appreciated by the majority of the women. As mood and somatic complaints did not differ significantly in explaining the experienced distress, other candidate factors need to be examined. Copyright

Metamemory and memory test performance in stroke patients (Article)

2009-10-01T00:00:00Z

Memory Self-Efficacy (MSE) has been shown to be related to memory performance and social participation in a healthy elderly population. This relation is unclear in stroke. As about 30% of all stroke survivors report memory complaints, there is an urgent need for effective treatment strategies. Before implementing MSE as a potential target in memory training, it should be examined whether the association between MSE and memory performance demonstrated in healthy elderly people also applies in stroke patients. This study therefore explored the predictive value of MSE on two kinds of memory tests in stroke patients; adjusted and unadjusted for age, gender, education and location of stroke. In 57 stroke patients, the Metamemory in Adulthood Questionnaire (MIA), an everyday memory test (RBMT) and a more traditional memory test (AVLT) were completed. The results show that MSE significantly predicts memory test performance on both memory tests (RBMT: =.34; p =.01 AVLT: =.28; p =.04). When adjusted for gender, age, education and location of stroke, the predictive value of MSE remained significant for the AVLT (RBMT: =.23; p =.07; AVLT: =.23; p =.05). The results support the hypothesis that MSE predicts test performance in stroke patients and, by consequence, enables improving memory performance in post-acute memory rehabilitation after stroke.

Long-term cognitive functioning in children and adolescents who survived septic shock caused by Neisseria meningitidis (Article)

2009-08-10T00:00:00Z

Aims. To assess long-term cognitive functioning and its predictors, in children and adolescents who survived meningococcal septic shock (MSS) 4 to 16 years ago. Methods. The Wechsler Intelligence Scale for Children - third edition was used to measure intellectual functioning and neuropsychological tests were used to measure attention, verbal memory, visual-motor integration, and executive skills. Results. Overall, results of the total MSS sample (N = 77) as to neuropsychological functioning were similar to those of normative reference groups. On social and practical reasoning and visual-motor integration, however,MSS children obtained poorer outcomes compared to normative data. Two children had mental retardation (estimated IQ < 70) due to the MSS. The percentage of children with mental retardation or borderline intellectual functioning (15%) was similar to that in the general population (16%). Eighteen children (23%) had a z score < - 22, indicating unusual poor functioning, on one or more domains of neuropsychological functioning (selective attention, sustained attention, and executive functioning). Compared to normative data, significantly more children had received special education services in the past. Older age at time of follow-up was the most important significant predictor of poorer long-term cognitive functioning. Conclusion. Overall, long-term outcomes as to cognitive functioning of the total MSS sample were similar to those of normative reference groups, but MSS children showed long-term impairments on social and practical reasoning, visual-motor integration, attention, and executive functioning. Older age at time of follow-up was a significant predictor.

The impact of nasal reconstruction following tumour resection on psychosocial functioning, a clinical-empirical exploration (Article)

2009-08-03T00:00:00Z

Objective: Total or partial nasal amputation following tumour resection is one of the more seevere facial disfigurements. Successful nasal reconstruction can therefore be regarded as restoring a patient's psychosocial health. The objective of this study, therefore, was to evaluate different determinants of patient's psychosocial functioning and their effect on patient satisfaction after nasal reconstruction. Methods: A cross-sectional study with a case-control study design was conducted. Level of satisfaction with nasal appearance and psychosocial functioning were assessed with validated questionnaires. Results: A total of 30 consecutive patients were recruited. They were treated between November 2001 and May 2005 for (sub)total nasal defects following radical tumour resection. For the control group 99 consented to participate. Social anxiety and avoidance were scored significantly higher within the patient group (p = 0.01). Patients cope significantly more passive than controls (p = 0.04). Self-esteem, levels did not differ significantly between patients and controls (p = 0.22). Determinants of satisfaction with nasal reconstruction were self-esteem (p = 0.0001), active coping strategy (p = 0.001), and passive coping strategy (p = 0.0001). Conclusion: Nasal reconstruction has an impact on psychosocial functioning of nasal reconstruction patients. In addition, self-esteem and coping strategy are important determinants of satisfaction with nasal reconstruction, and should be held in mind when treating a patient.

Fewer symptoms vs. more side-effects in schizophrenia? Opposing pathways between antipsychotic medication compliance and quality of life (Article)

2009-08-01T00:00:00Z

Abstract BACKGROUND: Non-compliance with medication often has long-term detrimental effects in patients with schizophrenia. However, when patients are compliant, it is not certain whether they experience short-term improved quality of life. By simultaneously reducing symptoms and increasing side-effects, compliance with antipsychotics may have opposing effects on a patient's perceived quality of life. AIM: This study aimed to identify any clinical-empirical evidence for two pathways between compliance and quality of life. METHOD: To evaluate various pathways between compliance (Service Engagement Scale plus a one-item rating), psychotic symptoms (Positive and Negative Syndromes Scale), adverse medication effects (Subjective Wellbeing under Neuroleptics scale), and quality of life (EQ-5D), we used Structural Equation Modeling on cross-sectional data of 114 patients with a psychotic disorder. RESULTS: Compliance was not directly related to quality of life (r=0.004). The best-fitting model (chi(2)=1.08; df=1) indicated that high compliance was associated with fewer psychotic symptoms (beta=-0.23) and more adverse medication effects (beta=0.22). Symptoms (beta=-0.17) and adverse medication effects (beta=-0.48) were both related to lower quality of life. DISCUSSION: Our results suggest that compliance with antipsychotics has two opposing pathways towards quality of life, albeit indirect ones. While compliance was associated with less severe psychotic symptoms, and was thus related to higher quality of life, it was also associated with more adverse medication effects, and was thus related to lower quality of life. However, due to our study design, we cannot draw firm conclusions on causality. Two possible clinical implications of the results for compliance and interventions are discussed.

The effectiveness of a training for patients with unexplained physical symptoms: protocol of a cognitive behavioral group training and randomized controlled trial (Article)

2009-07-01T00:00:00Z

Abstract: BACKGROUND: In primary care, up to 74% of physical symptoms is classified as unexplained. These symptoms can cause high levels of distress and healthcare utilization. Cognitive behavioral therapy has shown to be effective, but does not seem to be attractive to patients. An exception herein is a therapy based on the consequences model, which distinguishes itself by its labeling of psychosocial distress in terms of consequences rather than as causes of physical symptoms. In secondary care, 81% of the patients accepts this therapy, but in primary care the outcome is poor. We assume that positive outcome can also be reached in primary care, when the consequences model is modified and used bottom-up in an easily accessible group training, in which patients are relieved of being blamed for their symptoms. Our aim is to investigate the (cost-)effectiveness of this training. METHODS AND DESIGN: A randomized controlled trial is designed. One hundred patients are randomized to either the group training or the waiting list. Physicians in general practices and outpatients clinics of general hospitals refer patients. Referral leads to inclusion if patients are between 18 and 65 years old, understand Dutch, have no handicaps impeding participation and the principal DSM-IV-TR classification is undifferentiated somatoform disorder or chronic pain disorder. In contrast to other treatment effect studies, the co-morbidity of a personality disorder does not lead to exclusion. By this, we optimize the comparability between the study population and patients in daily practice enlarging the generalization possibilities. Also in contrast to other effect studies, we chose quality of life (SF-36) instead of physical symptoms as the primary outcome measure. The SF-6D is used to estimate Quality Adjusted Life Years (QALYs). Costs are measured with the Trimbos/iMTA Questionnaire for Costs associated with Psychiatric Illness. Measurements are scheduled at baseline, after the training or waiting list, three and twelve months after the training. The differences between measurements are analyzed according to the intention-to-treat principle. The cost-effectiveness is expressed as costs per QALY, using multiple sensitivity analyses on the basis of a probabilistic model of the trial. DISCUSSION: If we show that our group training is (cost-)effective, more patients could be served, their quality of life could be improved while costs might be reduced. As the training is investigated in a heterogeneous patient group in the daily practice of a mental healthcare institution, its transfer to practice should be relatively easy. TRIAL REGISTRATION: Nederlands Trial Register, NTR1609.

Stigma moderates the associations of insight with depressed mood, low self-esteem, and low quality of life in patients with schizophrenia spectrum disorders (Article)

2009-07-01T00:00:00Z

Abstract BACKGROUND: Good insight into illness in patients with schizophrenia is related not only to medication compliance and high service engagement, but also to depression, low self-esteem, and low quality of life. The detrimental effects of insight pose a problem for treatment. AIM: To investigate whether the negative associations of good insight are moderated by perceived stigma. METHOD: Respondents were 114 patients with schizophrenia spectrum disorders. We used Analyses of Variance (ANOVA) and Structural Equation Modeling (SEM) to test moderation. RESULTS: Good insight was associated with high service engagement and high compliance. Also, good insight was associated with depressed mood, low quality of life, and negative self-esteem. This association was strong when stigma was high and weak when stigma was low. SEM showed that the constrained model performed significantly worse than the unconstrained model, in which detrimental associations of insight were free to vary across stigma groups (chi(2)=19.082; df=3; p<.001). CONCLUSIONS: Our results suggest that the associations of insight with depression, low quality of life, and negative self-esteem are moderated by stigma. Patients with good insight who do not perceive much stigmatization seem to be best off across various outcome parameters. Those with poor insight have problems with service engagement and medication compliance. Patients with good insight accompanied by stigmatizing beliefs have the highest risk of experiencing low quality of life, negative self-esteem, and depressed mood. A clinical implication is that when it is attempted to increase insight, perceived stigma should also be addressed.

Interdisciplinary structural follow-up of surgical newborns: a prospective evaluation (Article)

2009-07-01T00:00:00Z

Background: Information on physical and developmental outcomes of children with anatomical congenital anomalies (CAs) may indicate the need for early intervention and reduce impact on the child's life and parental burden. Methods: From 1999 to 2003, 101 children with CA (76.5% of initial survivors) were seen 6-monthly in a tertiary children's hospital. Growth, neurologic outcome, mental and psychomotor development as determined with the Bayley Scales of Infant Development, and categorization of predictive sociodemographic and medical variables of the children were evaluated prospectively and longitudinally. Results: Congenital diaphragmatic hernia (CDH) and esophageal atresia patients showed impaired growth, that is, both height for age (-1.5 standard deviation score [SDS]) and weight for height (-1.0 SDS). Overall neurologic outcome was normal, however, suspect or abnormal for 40% of CDH patients. Overall mental development was normal, but psychomotor scores were significantly lower than the norm (95% confidence interval, 83.8-92.2 at 6 months and 87.9-98.5 at 24 months). Sex, maternal age, socioeconomic status, CA, severity-of-disease covariables, and need of medical appliances at home could predict negative outcome significantly (P < .05). Conclusions: The CA survivors show impaired growth and psychomotor developmental delay up to age 2 years. This warrants specific follow-up programs and infrastructure for these patients.

Construction of a parent satisfaction instrument: Perceptions of pediatric intensive care nurses and physicians (Article)

2009-06-01T00:00:00Z

Purpose: The aims of the study were (1) to identify parental satisfaction items through the opinions of pediatric intensive care unit (PICU) nurses and physicians, (2) to reach consensus on the identified items, and (3) to apply factor analysis to evaluate the items and domains toward a PICU parental satisfaction instrument. Materials and Methods: Pediatric intensive care unit nurses and physicians working in 8 university hospitals in the Netherlands participated. A 2-round Delphi method was completed. Confirmatory factor analysis was performed on the satisfaction items and domains. Results: Three hundred two nurses and 62 physicians participated in the Delphi study, and 269 (76%) completed 2 questionnaire rounds. In Delphi round 2, 14 of the 78 items had a mean of less than 8.0 (range, 1 [low importance] to 10 [high importance]). The interquartile range of all domains decreased by almost half, and only 10 satisfaction items had a heterogeneity of less than 70%. Structure determination revealed that 4 satisfaction items needed to be excluded. Out of 74 satisfaction items, 72 showed factor loadings greater than 0.50. The reliability estimates, Cronbach α, for the 6 domains varied from 0.74 to 0.92. Conclusions: Priorities in parental satisfaction measures are identified. The findings are fundamental in the development of a PICU parental satisfaction instrument.

Perceptions of parents on satisfaction with care in the pediatric intensive care unit: the EMPATHIC study (Article)

2009-06-01T00:00:00Z

Abstract: PURPOSE: To identify parental perceptions on pediatric intensive care-related satisfaction items within the framework of developing a Dutch pediatric intensive care unit (PICU) satisfaction instrument. METHODS: Prospective cohort study in tertiary PICUs at seven university medical centers in The Netherlands. PARTICIPANTS: Parents of 1,042 children discharged from a PICU. RESULTS: A 78-item questionnaire was sent to 1,042 parents and completed by 559 (54%). Seventeen satisfaction items were rated with mean scores <8.0 (1, completely unimportant, to 10, very important) with standard deviations > or =1.65, and thus considered of limited value. The empirical structure of the items was in agreement with the theoretically formulated domains: Information, Care and Cure, Organization, Parental Participation, and Professional Attitude. The Cronbach's alpha of the domains ranged between 0.87 and 0.94. CONCLUSIONS: Parental perceptions on satisfaction with care measures were identified and prioritized. Reliabilities of the items and domains were of high level.

Construction of the Sophia Observation withdrawal Symptoms-scale (SOS) for critically ill children (Article)

2009-06-01T00:00:00Z

Objective: To construct a reliable and clinically practical instrument for monitoring opioids and benzodiazepine withdrawal symptoms in pediatric ICU patients. Design: Instrument development. Setting: Intensive care unit in an academic children's hospital. Patients and participants: 79 patients up to age 16 years on intravenous midazolam and/or opioids for ≥5 days. An expert panel of 85 physicians and nurses rated clinical relevance of withdrawal symptoms. Intervention: During drug weaning repeated observations were performed with a checklist of 24 withdrawal symptoms described in the literature. Measurements and results: For 76 children, 932 observations were obtained within 24 h after decrease and/or discontinuation of midazolam or opioids. Most frequent symptoms were tachypnea, agitation, motor disturbance, diarrhea, fever, anxiety, sleep disturbance and hypertension (14.6-29.6%). Multidimensional scaling (MDS) was performed to detect the underlying empirical structure of co-occurrences of symptoms. An expert panel judged clinical relevance of each withdrawal symptom on a four-point scale ranging from 'definitively so' to 'definitively not'. Agitation, anxiety, inconsolable crying, increased muscle tension, tremors, tachycardia and sweating were considered relevant by 85-95% of the experts. On the basis of the MDS results and the experts' opinions, 15 symptoms were included in the final instrument. Conclusions: We are the first to develop an assessment tool for withdrawal symptoms in pediatric ICU patients on the basis of the underlying empirical structure of co-occurrences of withdrawal symptoms that experts considered relevant. Future studies need to define cut-off points and clarify psychometric issues.

Quality of life in children with primary headache in a general hospital (Article)

2009-06-01T00:00:00Z

Knowledge on the quality of life of children with headache is lacking. Until now only a few studies in this field have provided information on a limited number of life domains. The aim of this study was to assess the quality of life in a comprehensive number of life domains in children with primary headache presenting at an out-patient paediatric department in a general hospital. From October 2003 to October 2005 all children referred to the out-patient paediatric department of the Vlietland Hospital because of primary headache were investigated by protocol. A thorough history was taken and a general physical and neurological examination was performed. The International Headache Society criteria were used for classification. Quality of life (QoL) was measured using the Dutch version of the Child Health Questionnaire (CHQ-PF50 Dutch edition) and compared with data from a previously investigated cohort of healthy children from the same region, and with data from a cohort of children from the USA with asthma or with attention deficit hyperactivity disorder (ADHD), investigated with the CHQ-PF50. A total of 70 primary headache patients were included in the study (25 with tension-type headache, 36 with migraine, seven with chronic tension-type headache, two with both tension-type headache and migraine). Their mean age was 10.6 years (range 4-17 years); 37 children were male. On all but one subscale (self-esteem) the QoL of the children with primary headache was decreased compared with the cohort of healthy children, especially on the domains of mental health, parental impact time and family cohesion. Compared with the cohort of children with asthma the QoL was significantly worse for our headache group on seven subscales and significantly better on one subscale (general health perception). Compared with the cohort of children with ADHD, the QoL was significantly worse on six subscales but significantly better on three subscales. There were no significant differences on any QoL subscale between children with tension-type headache and children with migraine. We conclude that the QoL in children with primary headache presenting at the out-patient paediatric department of a general hospital seems to be considerably diminished. Furthermore, we conclude that, in this population there is no difference in QoL between children with tension-type headache and those with migraine.

Validation of a questionnaire assessing patient's aesthetic and functional outcome after nasal reconstruction: the patient NAFEQ-score (Article)

2009-05-01T00:00:00Z

In determining patient satisfaction with functional and aesthetic outcome after reconstructive surgery, including nasal reconstruction, standardised assessment instruments are very important. These standardised tools are needed to adequately evaluate and compare outcome results. Since no such instrument existed for nasal reconstruction, a standardised evaluation questionnaire was developed to assess aesthetic and functional outcome after nasal reconstruction. Items of the Nasal Appearance and Function Evaluation Questionnaire (NAFEQ) were derived from both the literature and experiences with patients. The NAFEQ was validated on 30 nasal reconstruction patients and a reference group of 175 people. A factor analysis confirmed the arrangement of the questionnaire in two subscales: functional and aesthetic outcome. High Cronbach's alpha values (>0.70) for both subscales showed that the NAFEQ was an internally consistent instrument. This study demonstrated that the NAFEQ can be used as a standardised questionnaire for detailed evaluation of aesthetic and functional outcome after nasal reconstruction. Its widespread use would enable comparison of results achieved by different techniques, surgeons and centres in a standardised fashion.

Intelligence of very preterm or very low birthweight infants in young adulthood (Article)

2009-05-01T00:00:00Z

Objective: To examine the effect of intrauterine and neonatal growth, prematurity and personal and environmental risk factors on intelligence in adulthood in survivors of the early neonatal intensive care era. Methods: A large geographically based cohort comprised 94% of all babies born alive in the Netherlands in 1983 with a gestational age below 32 weeks and/or a birth weight >1500 g (POPS study). Intelligence was assessed in 596 participants at 19 years of age. Intrauterine and neonatal growth were assessed at birth and 3 months of corrected age. Environmental and personal risk factors were maternal age, education of the parent, sex and origin. Results: The mean (SD) IQ of the cohort was 97.8 (15.6). In multiple regression analysis, participants with highly educated parents had a 14.2-point higher IQ than those with less well-educated parents. A 1 SD increase in birth weight was associated with a 2.6-point higher IQ, and a 1-week increase in gestational age was associated with a 1.3-point higher IQ. Participants born to young mothers (<25 years) had a 2.7-point lower IQ, and men had a 2.1-point higher IQ than women. The effect on intelligence after early (symmetric) intrauterine growth retardation was more pronounced than after later (asymmetric) intrauterine or neonatal growth retardation. These differences in mean IQ remained when participants with overt handicaps were excluded. Conclusions: Prematurity as well as the timing of growth retardation are important for later intelligence. Parental education, however, best predicted later intelligence in very preterm or very low birthweight infants.

Randomized controlled trial to investigate the effects of growth hormone treatment on scoliosis in children with prader-willi syndrome (Article)

2009-04-01T00:00:00Z

Context: The prevalence of scoliosis in children with Prader-Willi syndrome (PWS) is 30-80%, depending on age. Although reports about effects of GH treatment on scoliosis in children with PWS are limited, scoliosis is generally considered a contraindication for GH treatment. Objective: The aim was to study the effects of GH treatment on the onset of scoliosis and curve progression in children with PWS. Design: We conducted a multicenter, randomized, controlled GH study in infants and prepubertal and pubertal children. Infants and prepubertal children were randomized into a GH-treated group (1.0 mg/m2 · d) and a control group for 1 and 2 yr, respectively. Pubertal children were randomized to receive somatropin 1.0 or 1.5 mg/m2 · d. Yearly, x-rays of the spine were taken, and height, weight, truncal lean body mass (with dual energy x-ray absorptiometry), and IGF-I were measured. Patients: A total of 91 children with PWS (median age, 4.7 yr; interquartile range, 2.1-7.4) participated in the study. Main Outcome Measures: We measured the onset of scoliosis (Cobb <10°) and scoliotic curve progression. Results: GH-treated children had similar onset of scoliosis and curve progression as randomized controls (P = 0.27-0.79 and P = 0.18-0.98, respectively). GH treatment, IGF-I sd score (SDS), and catch-up growth had no adverse effect on the onset of scoliosis or curve progression, even after adjustment for confounders. Height SDS, truncal lean body mass, and IGF-I SDS were significantly higher in GH-treated children than in randomized controls. At baseline, a higher IGF-I SDS was associated with a lower severity of scoliosis. Conclusions: Scoliosis should no longer be considered a contraindication for GH treatment in children with PWS.

Does preterm birth influence the response to growth hormone treatment in short, small for gestational age children? (Article)

2009-04-01T00:00:00Z

Objective To investigate whether prematurity has an independent influence on the response to GH treatment in short, small for gestational age (SGA) children. Design A longitudinal 3-year GH study. Patients A total of 392 prepubertal non-GH-deficient, short SGA children, comprising 138 preterm (< 36 weeks) and 254 term (≥ 36 weeks) children. Measurements Height, weight, head circumference, skinfolds and serum IGF-I and IGFBP-3 levels were measured before start of GH treatment and after 6 months, 1, 2 and 3 years of treatment. Results Preterm short SGA children were significantly lighter and shorter at birth after correction for gestational age than term short SGA children (P < 0·001). At start of GH treatment, preterm children were significantly shorter than term children when height was corrected for target height (TH). Preterm children were also significantly leaner as shown by a lower body mass index (BMI) standard deviation score (SDS) and a lower sum of four skinfolds SDS. Prematurity had no influence on childhood IGF-I and IGFBP-3 levels. The response to GH treatment was similar for preterm and term SGA children. Conclusions Within a population of short SGA children, prematurity is associated with a smaller size for gestational age and a shorter height corrected for TH and leaner phenotype in childhood. The response to GH treatment is similar for preterm and term short SGA children.

Sense of competence in a Dutch sample of informal caregivers of frontotemporal dementia patients (Article)

2009-04-01T00:00:00Z

Objective: The sense of competence (SC) of informal caregivers of frontotemporal dementia (FTD) patients is important for their task but has rarely been assessed. Here, the relationship between caregiver burden and SC and the differential value of SC in understanding caregiver suffering were studied. Methods: At 24 months of follow-up patient behavioural problems, dementia severity, caregiver SC, burden, psychological complaints and quality of life were inspected cross-sectionally in 46 caregiver/care recipient dyads. Results: SC was unrelated to dementia severity and patient behavioural problems. Principal component analysis of SC revealed 3 dimensions: 'emotions', 'attributions' and 'sacrifice'. Sacrificing one's personal life to caregiving was associated with more psychological complaints and a worse physical and mental quality of life, as found in structural equation modelling. Conclusions: Caregiver suffering comprised an unbalance between self-care and caring for the FTD patient. FTD caregivers may benefit from psycho-education on self-care and methods to create time for their personal needs.

Frontotemporal dementia (FTD) patients living at home and their spousal caregivers compared with institutionalized FTD patients and their spousal caregivers: Which characteristics are associated with in-home care? (Article)

2009-02-12T00:00:00Z

Patients with frontotemporal dementia (FTD) need complete care in the final stages of the disease. Some informal caregivers continue the in-home care whereas others institutionalize. This study identifies differences between in-home FTD patients and their caregivers (FTDH) and institutionalized FTD patients (FTDN) and their caregivers. Twelve in-home and 24 institutionalized FTD patients in the final stages of the disease, and their spousal caregivers, were observed. Neuropsychiatric function disorders, dementia duration and severity, burden, mental and physical health, quality of the current and premorbid relationship and caregiver motivation were analysed. The majority of FTDH patients had dementia of shorter duration and showed residual independence. In FTDH patients, neuropsychiatric symptoms were more often present whereas apathy and disinhibition were more intense in FTDN patients. FTDH caregivers felt more emotionally burdened but had better mental health. Caregiver motivations were similarly present in FTDH and FTDN caregivers, while the love-motivated caregivers had worse physical and mental health. Our data suggest that all FTD caregivers could benefit from psychological support. Motivation for caregiving has intervention potential.

De effectiviteit van re-integratietraining versus boostersessies na kortdurende klinische psychotherapie: een gerandomiseerd klinisch onderzoek (Article)

2009-01-01T00:00:00Z

Abstract BACKGROUND: Standardised evaluation studies performed in the Netherlands in a large number of inpatient and day-treatment hospitals providing psychotherapy have shown significant symptomatic improvements in patients between the date of entry to the studies and follow-up after one year. However, the work situation of ex-patients hardly changed and a large number of patients were still receiving psychotherapy. AIM: To examine the effectiveness of a specifically designed course of re-integration training. METHOD: A group of 128 patients were assigned randomly either to a re-integration training course aimed at improved functioning at work and improved relationships, or to booster sessions. Outcome measures were symptom level, work status, absence from work, and further psychotherapy. results After two years the number of patients in paid employment remained the same (76%) in the re-integration training course and increased from 67 to 87% in the booster sessions. Attendance was significantly higher in the booster sessions than in the re-integration training. There were no differences in the other outcome measures. CONCLUSION: We conclude that re-integration training was no more effective than the booster sessions. Our hypothesis is that continuity of care (therapists plus programme) explains the favourable result of the booster sessions.

Construction of a parent satisfaction instrument: Perceptions of pediatric intensive care nurses and physicians (Article)

2009-01-01T00:00:00Z

MAAS (Multi-axial Aphasia System): Realistic goal setting in aphasia rehabilitation (Article)

2008-12-01T00:00:00Z

Treatment success in aphasia is influenced by various factors. Clinical decisions, including patient selection and decisions on frequency and content, are often guided by a clinician's implicit opinions. The Multi-axial Aphasia System (MAAS) was developed to structure linguistic, somatic, neuropsychological, psychosocial and socio-economic information on five separate axes, enabling an explicit and interdisciplinary process of clinical decision-making. The objectives of this study were to investigate the potentialities of MAAS in predicting the outcome of cognitive-linguistic treatment. A group of 58 aphasic patients were investigated prospectively. All received cognitive-linguistic treatment during a randomized, controlled study on the efficacy of lexical semantic treatment. An interdisciplinary aphasia team rated the pretreatment MAAS profiles of all patients. The team was blinded for treatment allocation and outcome. A multiple linear regression analysis was performed with the posttreatment verbal communication score as the variable to be predicted and the overall MAAS rating, age and type of treatment as predictor variables. In a second multiple regression analysis, the ratings for each of the five MAAS axes were used as candidate predictors. The team's overall rating contributed significantly to the prediction of verbal communicative ability after linguistic treatment. Of the five MAAS axes, the neuropsychological axis contributed to the prediction. An interdisciplinary approach to aphasia assessment may contribute to realistic goal setting in aphasia rehabilitation. The results of this study stress the importance of neuropsychological assessment of aphasic patients before treatment.

Cognition and behavior in pre-pubertal children with Prader-Willi syndrome and associations with sleep-related breathing disorders (Article)

2008-12-01T00:00:00Z

Prader-Willi syndrome (PWS) is characterized by hypotonia, hypogonadism, obesity, and short stature. Neurobehavioral abnormalities, cognitive impairment, and sleep-related breathing disorders (SRBD) are common. In the general population associations between neurobehavioral and cognitive abnormalities and SRBD have been found. We investigated cognition, behavior, and SRBD in children with PWS. Thirty-one pre-pubertal PWS children were evaluated (5 with paternal deletion, 14 with maternal disomy, 4 with imprinting-center mutation, and in 8 the defect was not specified). Cognition was assessed by Wechsler scale subtests, and behavior by parent-questionnaires. Polysomnography was performed. Cognition, behavior, and associations with SRBD were evaluated. All cognitive subtests were significantly below O SDS, with the lowest median (interquartile range) scores for the Block design subtest (-2.7 SDS (-3.0 to -0.3)). In 60%, verbal subtests were less affected than performance subtests. Parents reported problem behavior related to "emotions/behavior not adapted to the social situation" and "insensitivity to social information." All children had SRBD, with an Apnea Hypopnea Index of 4.1/hr (2.6-7.9). One performance subtest score was significantly higher in children with better sleep efficiency, and daytime sleepiness was associated with more autistic-like social impairment. In contrast to our expectations, behavior was worse in children with better sleep-related breathing. In pre-pubertal PWS children, cognition is impaired. Neurobehavioral abnormalities are common, particularly autistic-like social impairment. Sleep efficiency was associated with better performance on one of the performance subtests, and neurobehavioral abnormalities were associated with daytime sleepiness. In contrast, we could not confirm a positive association of neurobehavioral abnormalities with SRBD in PWS.

Impact of a child with congenital anomalies on parents (ICCAP) questionnaire; a psychometric analysis (Article)

2008-11-23T00:00:00Z

Background: The objective of this study was to validate the Impact of a Child with Congenital Anomalies on Parents (ICCAP) questionnaire. ICCAP was newly designed to assess the impact of giving birth to a child with severe anatomical congenital anomalies (CA) on parental quality of life as a result of early stress. Methods: At 6 weeks and 6 months after birth, mothers and fathers of 100 children with severe CA were asked to complete the ICCAP questionnaire and the SF36. The ICCAP questionnaire measures six domains: contact with caregivers, social network, partner relationship, state of mind, child acceptance, and fears and anxiety. Reliability (i.e. internal consistency and test-retest) and validity were tested and the ICCAP was compared to the SF-36. Results: Confirmatory factor analysis resulted in 6 six a priori constructed subscales covering different psychological and social domains of parental quality of life as a result of early stress. Reliability estimates (congeneric approach) ranged from .49 to .92. Positive correlations with SF-36 scales ranging from .34 to .77 confirmed congruent validity. Correlations between ICCAP subscales and children's biographic characteristics, primary CA, and medical care as well as parental biographic and demographic variables ranged from -.23 to .58 and thus indicated known-group validity of the instrument. Over time both mothers and fathers showed changes on subscales (Cohen's d varied from .07 to .49), while the test-retest reliability estimates varied from .42 to .91. Conclusion: The ICCAP is a reliable and valid instrument for clinical practice. It enables early signaling of parental quality of life as a result of early stress, and thus early intervention.

Frontotemporal dementia: Change of familial caregiver burden and partner relation in a Dutch cohort of 63 patients (Article)

2008-11-01T00:00:00Z

Background/Aims: The current study examined the change of caregiver burden and the development of the quality of the partner relation in frontotemporal dementia (FTD). Methods: During a 2-year period, deterioration, behavioural problems, caregiver burden, general psychopathology, quality of life, social support, coping strategies and relationship quality were inspected in 63 FTD caregiver-care recipient dyads. Results: After 2 years patients reached maximum dementia severity with stable Neuropsychiatric Inventory levels. Contrary to expectations, caregiver burden decreased and psychological well-being remained stable. Coping style and social support changed unfavourably. Relationship closeness and getting along were preserved, whereas communication and sharing viewpoint on life were dramatically reduced. Conclusions: FTD caregivers need support in coping with the increasingly hopeless situation of their patients. Future research methods into caregiver burden should address response shift as a means for psychological adjustment. Copyright

Randomized controlled GH trial: Effects on anthropometry, body composition and body proportions in a large group of children with Prader-Willi syndrome (Article)

2008-09-01T00:00:00Z

Background: Prader-Willi syndrome (PWS) children have impaired growth, and abnormal body composition. Previous 1-year controlled studies showed improvement of height and body composition during GH-treatment. Objective: To evaluate growth, body composition and body proportions during GH-treatment in a large group of PWS children. Design/patients: We performed a randomized controlled GH trial in 91 prepubertal PWS children (42 infants, 49 children, aged 3-14 years). After stratification for age, infants were randomized to GH-treatment (GH-group; 1 mg/m2/day; n = 20), or no treatment (control group; n = 22) for 1 year. In the second year all infants were treated with GH. After stratification for BMI, children > 3 years of age were randomized to GH-treatment (GH-group; 1 mg/m2/day; n = 27) or no treatment (control group; n = 22) for 2 years. Anthropometric parameters were assessed once in every 3 months. Body composition was measured by Dual Energy X-ray Absorptiometry. Results: Median (interquartile range, iqr) height SDS increased during 2 years of GH in infants from -2.3 (-2.8 to -0.7) to -0.4 (-1.1-0.0) and in prepubertal children from -2.0 (-3.1 to -1.7) to -0.6 (-1.1 to -0.1). In non-GH-treated children height SDS did not increase. Head circumference completely normalized during 1 and 2 years of GH in infants and children, respectively. Body fat percentage and body proportions improved in GH-treated children, but did not completely normalize. Lean body mass SDS improved compared to the control group. Serum IGF-I increased to levels above the normal range in most GH-treated children. Conclusions: Our randomized study shows that GH-treatment in PWS children significantly improves height, BMI, head circumference, body composition and body proportions. PWS children are highly sensitive to GH, suggesting that monitoring of serum IGF-I is indicated.

The effect of group cohesion on rehabilitation outcome in cancer survivors (Article)

2008-09-01T00:00:00Z

Objective: Group-based physical training interventions have been shown to be effective in increasing quality of life in cancer survivors. Until now, however, the impact of cohesion within the group on intervention outcome has not been investigated. Methods: We examined self-reported individual group cohesion ratings collected in the first half of a 12-week rehabilitation programme for cancer survivors (N = 132). Four dimensions of group cohesion were measured, i.e. the bond with the group as whole, the bond with other members, cooperation within the group and the instrumental value. Quality of life, physical functioning and fatigue were assessed before and after the intervention using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30. Linear multiple multivariate regression analysis was conducted to explore the relationship between group cohesion and intervention outcome. Results: The relationship between group cohesion and outcome was significantly modified by gender. Higher ratings of cooperation within the group predicted better post-intervention quality of life and physical functioning and less fatigue in men, and better quality of life and physical functioning in women. Additionally, women who reported a stronger bond with other members showed a lower quality of life after the intervention. No relationship was found between the instrumental value and the outcome variables. Conclusion: Some dimensions of group cohesion seem to be associated with intervention outcome. The underlying mechanisms need to be unravelled. Copyright

Mental and motor development before and during growth hormone treatment in infants and toddlers with Prader-Willi syndrome (Article)

2008-06-01T00:00:00Z

Background: Prader-Willi syndrome (PWS) is a neurogenetic disorder characterized by muscular hypotonia, psychomotor delay, feeding difficulties and failure to thrive in infancy. GH treatment improves growth velocity and body composition. Research on the effects of GH on psychomotor development in infants with PWS is limited. Objective: To evaluate psychomotor development in PWS infants and toddlers during GH treatment compared to randomized controls. Design/patients: Forty-three PWS infants were evaluated at baseline. Twenty-nine of them were randomized into a GH group (n = 15) receiving 1 mg/m2/day GH or a non-GH-treated control group (n = 14). At baseline and after 12 months of follow-up, analysis with Bayley Scales of Infant Development II (BSID-II) was performed. Data were converted to percentage of expected development for age (%ed), and changes during follow-up were calculated. Results: Infants in the GH group had a median age of 2.3 years [interquartile range (IQR) 1.7-3.0] and in the control group of 1.5 years (IQR 1.2-2.7) (P = 0.17). Both mental and motor development improved significantly during the first year of study in the GH group vs. the control group: median (IQR) change was +9.3% (-5.3 to 13.3) vs. -2.9% (-8.1 to 4.9) (P < 0.05) in mental development and +11.2% (-4.9 to 22.5) vs. -18.5% (-27.9 to 1.8) (P < 0.05) in motor development, respectively. Conclusion: One year of GH treatment significantly improved mental and motor development in PWS infants compared to randomized controls.

Effectiveness of health-related quality-of-life measurement in clinical practice: A prospective, randomized controlled trial in patients with chronic liver disease and their physicians (Article)

2008-03-01T00:00:00Z

Background: This study assessed the effectiveness of computerized measurement and feedback of health-related quality of life (HRQoL) in daily clinical practice in patients with chronic liver disease. Methods: One hundred and sixty-two patients (61% men; mean age 47.5 years) regularly completed computerized HRQoL questionnaires before each consultation for the duration of 1 year. Six physicians were randomly assigned to the experimental group and received an instant online graphical output of data. Five other physicians were randomly assigned to the control group and conducted their consultations as usual. Differences between groups on generic- and disease-specific HRQoL, patient management, and patient satisfaction with the consultation were assessed, as were physicians' experiences with HRQoL data and effects on their consultations. Results: No direct effect of the experimental condition on patients' HRQoL was found. However, an interaction effect of the experimental condition and age was found: older patients in the experimental group had significantly better disease-specific HRQoL (F = 4.16; P = 0.04) and generic mental HRQoL (F = 4.62; P = 0.03) than patients in the control group. Also, male patients in the experimental group had better generic mental HRQoL than patients in the control group (F = 6.10; P = 0.02). Physicians in the experimental group altered their treatment policy significantly more often than did physicians in the control group (z = -3.73, P = 0.00), and their experiences with the availability of HRQoL information were generally positive. The scores on patient satisfaction with the consultation did not differ significantly between the experimental and control groups (z = -1.20, P = 0.23). Conclusions: Computerized measurement and feedback of HRQoL in a daily clinical practice of an outpatient department of hepatology did not improve HRQoL for the entire group of chronic liver patients but, rather, improved disease-specific HRQoL of older patients with chronic liver disease and mental HRQoL of older patients and male patients with chronic liver disease. It also had an effect on patient management.

The common sense model of self-regulation and psychological adjustment to predictive genetic testing: A prospective study (Article)

2007-12-01T00:00:00Z

This prospective study explored the contribution of illness representations and coping to cancer-related distress in unaffected individuals undergoing predictive genetic testing for an identified mutation in BRCA1/2 (BReast CAncer) or an HNPCC (Hereditary Nonpolyposis Colorectal Cancer)-related gene, based on the common sense model of self-regulation. Coping with hereditary cancer (UCL), illness representations (IPQ-R) and risk perception were assessed in 235 unaffected applicants for genetic testing before test result disclosure. Hereditary cancer distress (IES) and cancer worry (CWS) were assessed before, 2 weeks after and 6 months after result disclosure. Timeline (r = 0.30), consequences (r = 0.25), illness coherence (r = 0.21) and risk perception (r = 0.20) were significantly correlated to passive coping. Passive coping predicted hereditary cancer distress and cancer worry from pre-test (β= 0.46 and 0.42, respectively) up to 6 months after result disclosure (β= 0.32 and 0.19, respectively), Illness coherence predicted hereditary cancer distress up to 6 months after result disclosure (β= 0.24), too. The self-regulatory model may be useful to predict the cognitive and emotional reactions to genetic cancer susceptibility testing. Identifying unhelpful representations and cognitive restructuring may be appropriate interventions to help distressed individuals undergoing genetic susceptibility testing for a BRCA1/2 or a HNPCC-related mutation. Copyright

A computerised communication aid in severe aphasia: An exploratory study (Article)

2007-11-01T00:00:00Z

Purpose. To investigate the efficacy of TouchSpeak (TS), a handheld computerised communication aid for aphasia. Method. A pre-post one-group design was used with a referred sample of 34 patients with a severe aphasia and a need for alternative and augmentative communication (AAC). The participants were trained to use TS in two self-chosen communicative situations. The ability to navigate the hierarchical vocabulary and overall communicative ability were assessed. Participants rated their communicative success with and without TS. Three years after completion of the training, participants were interviewed about their present use of TS. Results. In total, 76% used TS outside the clinic in two trained communicative situations. Overall communicative ability improved, as tested in untrained scenarios. Quality of communication with TS was rated higher than without TS. Fifty per cent obtained their own TS after the training and after 3 years 6% still used TS. Conclusions. Aphasic communication can be supported effectively by TS. Patients with a severe aphasia are able to master a hierarchical computerised vocabulary and to use it in daily life for specific communicative situations. In addition, TS may also have a generalised effect on overall communicative ability. For most patients, the supportive role of TS is temporary.

Effectiveness of group psychotherapy compared to social support groups in patients with primary, non-metastatic breast cancer (Article)

2007-10-05T00:00:00Z

The aim of the present study is to compare the effectiveness of experiential-existential group psychotherapy with a social support group for women with a primary breast cancer on psychosocial adjustment. A total of 67 well-adjusted women, who had been operated not earlier than 4 months before start of the study, were randomized into one of the two conditions: participating in the group psychotherapy or in the support group. They were questioned at the start of the study, at the end of the intervention, and 1 year after completion of the intervention. Results at follow-up were mixed: Positive changes were reported for Body Image and Recreation, regardless of type of intervention. Other psychosocial adjustment indicators did not change. In general, we may conclude that well-adjusted women diagnosed with breast cancer do not specifically benefit from these types of interventions. Copyright

Thyroid hormone levels in children with Prader-Willi syndrome before and during growth hormone treatment (Article)

2007-09-01T00:00:00Z

Background: Prader-Willi syndrome (PWS) is a neurogenetic disorder characterized by muscular hypotonia, psychomotor delay, obesity and short stature. Several endocrine abnormalities have been described, including GH deficiency and hypogonadotrophic hypogonadism. Published data on thyroid hormone levels in PWS children are very limited. Objective: To evaluate thyroid function in children with PWS, before and during GH treatment. Design/patients: At baseline, serum levels of T4, free T4 (fT4), T3, reverse T3 (rT3) and TSH were assessed in 75 PWS children. After 1 year, assessments were repeated in 57 of the them. These children participated in a randomized study with two groups: group A (n = 34) treated with 1 mg GH/m2/day and group B (n = 23) as controls. Results: Median age (interquartile range, IQR) of the total group at baseline was 4.7 (2.7-7.6) years. Median (IQR) TSH level was -0.1 SDS (-0.5 to 0.5), T4 level -0.6 SDS (-1.7 to 0.0) and fT4 level -0.8 SDS (-1.3 to -0.3), the latter two being significantly lower than 0 SDS. T3 level, at 0.3 SDS (-0.3 to 0.9), was significantly higher than 0 SDS. After 1 year of GH treatment, fT4 decreased significantly from -0.8 SDS (-1.5 to -0.2) to -1.4 SDS (-1.6 to -0.7), compared to no change in untreated PWS children. However, T3 did not change, at 0.3 SDS (-0.1 to 0.8). Conclusions: We found normal fT4 levels in most PWS children. During GH treatment, fT4 decreased significantly to low-normal levels. TSH levels remained normal. T3 levels were relatively high or normal, both before and during GH treatment, indicating that PWS children have increased T4 to T3 conversion.

Case-referent comparison of cognitive functions in patients receiving haematopoietic stem-cell transplantation for haematological malignancies: Two-year follow-up results (Article)

2007-09-01T00:00:00Z

During bone marrow or haematopoietic stem-cell transplantation (HSCT), potentially neurotoxic treatments are used. Previous studies identified cognitive disturbances in patients treated with HSCT, but prospective studies with longitudinal assessment are sparse. We examined cognitive functions up to 20 months after a first baseline assessment in 101 patients undergoing HSCT and in 82 reference patients with a haematological malignancy treated with non-myeloablative cancer therapies. Baseline findings revealed no between-group differences and demonstrated mild cognitive impairments in both groups. Follow-up analyses showed no significant changes over time, though poorer performance in attention and executive function, and psychomotor function was found in HSCT patients. Our results suggest limited HSCT-related cognitive dysfunctions. Additional follow-up is necessary to assess long-term effects.

Passive coping and psychological distress in women adhering to regular breast cancer surveillance (Article)

2007-09-01T00:00:00Z

Since 2000 the MRISC study evaluates the psychological consequences of regular breast cancer surveillance for women at increased risk for hereditary breast cancer. Coping style way influence these psychological consequences. In a cohort of 357 women at increased risk for hereditary breast cancer, the impact of coping styles on the course, divided into level and trend of psychological distress (general and breast cancer specific) was examined, around two consecutive surveillance appointments. With structural equation modelling we found passive coping to be associated with higher levels of both general and breast cancer specific distress. Seeking social support, expression of emotions and thinking comforting thoughts were associated with lower levels of psychological distress. Coping style was not associated with the trend of psychological distress around the two surveillance appointments. it is recommendable to take coping styles into account when counselling these high-risk women. Copyright

Psychomotor development in infants with Prader-Willi syndrome and associations with sleep-related breathing disorders (Article)

2007-08-01T00:00:00Z

Prader-Willi syndrome (PWS) is a neurogenetic disorder with hypotonia, psychomotor delay, obesity, short stature, and sleep-related breathing disorders. The aim of this study was to evaluate the association between psychomotor development and sleep-related breathing disorders in PWS infants. Bayley Scales of Infant Development were performed in 22 PWS infants, with a median (interquartile range, IQR) age of 1.8 (1.1-3.4) y, and a body mass index SD score (BMISDS) of -0.5 (-1.3 to 1.6). We evaluated psychomotor development in relation to results of polysomnography. Median (IQR) mental and motor development was 73.1% (64.3-79.6%) and 55.2% (46.5-63.1%) of normal children, respectively. All infants had sleep-related breathing disorders, mostly of central origin. The apnea hypopnea index was not associated with psychomotor development. Only four infants had obstructive sleep apnea syndrome (OSAS). They had a significantly delayed mental development of 65.5% (60.0-70.3%) of normal. They had a median BMISDS of 1.4 (0.1-1.6), which tended to be higher than in those without OSAS. Our data indicate that psychomotor development in PWS infants is not related to central sleep-related breathing disorders, but infants with OSAS have more severely delayed mental development, suggesting that PWS infants should be screened for OSAS.

High-tech AAC and severe aphasia: Candidacy for TouchSpeak (TS) (Article)

2007-05-01T00:00:00Z

Background: Increasingly, computerised communication aids are used by people with severe, chronic aphasia. Although the candidacy for these devices is relatively unknown, it has been hypothesised that cognitive deficits have a negative impact on the functional use of Augmentative and Alternative Communication (AAC). Deficits of executive functioning are assumed to be particularly important, but other functions, such as memory and semantic processing, may also be relevant. In a previous study (van de Sandt-Koenderman, Wiegers, Wielaert, Duivenvoorden, & Ribbers, in press) we reported the functional effect of TouchSpeak (TS), a computerised communication aid, in a group of stroke patients with severe aphasia. The successful participants showed different levels of proficiency. Some were able to use the system independently and creatively in many situations, some used it independently for trained situations, and others remained partner dependent in using TS. Aims: To find factors associated with the functional success of TS in people with severe aphasia, focusing on memory, executive functioning, semantic processing, and communication skills. Methods & Procedures: The data of 30 patients with severe aphasia were analysed retrospectively. All were trained to use TS in two self-chosen communicative situations. Four outcome levels were differentiated: no use, dependent use, independent use, and extensive use of TS. Pre-training assessment included memory, executive functioning, semantic processing, and communication skills. The four outcome groups were compared regarding age, time post onset, gender, and aphasia type. The role of the cognitive variables was analysed with univariate ANCOVAs with contrast analysis, with correction for age, gender, aphasia type, or time post onset in case of significant differences between the groups on these variables. Outcomes & Results: Seven participants were classified as extensive users of TS, five were independent TS users, and five were partner dependent. In 13 cases there was no functional use of TS. Extensive users were younger than the other outcome groups. Independent of this age effect, there was an effect of semantic processing; the no-use group scored significantly lower on semantics than all other groups. Conclusions: Only a minority of patients with severe aphasia may be expected to become independent, flexible users of high-tech AAC. The finding that functional success was related to semantic processing is clinically important. Prospective studies are needed to support the predictive value of semantic processing for high-tech AAC use. The importance of intact executive functioning is not supported in this study. The broad concept of "executive functioning" needs to be studied in more detail in relation to aphasia.

The implementation of a kidney exchange program does not induce a need for additional psychosocial support (Article)

2007-05-01T00:00:00Z

The Dutch kidney exchange donation program started in January 2004. A literature review has shown that several factors of the exchange program could influence the psychological well being of participants, such as the loss of the possibility of a 'medical excuse' for unwilling donors and the issue of anonymity. However, these factors have not been the subject of empirical study yet. We therefore studied these factors to determine whether additional psychosocial support is necessary for donors and recipients in the Dutch kidney exchange program. We used structured interviews for all 48 donors and recipients that had undergone exchange donation/transplantation in 2004. A psychologist interviewed the participants before and 3 months after transplantation. We included a comparison group of 48 donors and recipients participating in the regular living kidney donation program. Donors did not experience additional pressure to donate due to the exchange donation. Most participants (69%) preferred anonymity between the couples. Ten percentage needed additional emotional support. In this respect the exchange group did not differ from the comparison group. We conclude that the psychosocial support offered to exchange couples can be comparable with the support normally offered to participants in the regular living kidney donation program.

Adiponectin levels in prepubertal children with Prader-Willi syndrome before and during growth hormone therapy (Article)

2007-04-01T00:00:00Z

Context: Children with Prader-Willi syndrome (PWS) may have obesity and an abnormal body composition with a high body fat percentage, even if they have a normal body weight. Adiponectin has been inversely related to obesity and insulin resistance. Objective: The objective of the study was to evaluate in prepubertal PWS children the following: 1) adiponectin levels, body composition, carbohydrate metabolism, and triglyceride levels; 2) associations between adiponectin and body composition, carbohydrate metabolism, and triglycerides; and 3) effects of GH treatment on these outcome measures. Patients: Twenty prepubertal PWS children participated in the study. Intervention: The subjects were randomized into a GH treatment group (n = 10, 1 mg/m2·d) and a non-GH-treated control group (n = 10). Main Outcome Measures: At baseline, after 1 and 2 yr of GH treatment, fasting levels of adiponectin, glucose, insulin, and triglycerides were assessed. Body composition and fat distribution were measured by dual energy x-ray absorptiometry. Results: PWS children had significantly higher median (interquartile range) adiponectin levels [17.1 mg/liter (13.9 -23.2)] than healthy sex- and age-matched controls [11.8 mg/liter (9.7-12.5), P < 0.005]. Body fat percentage was significantly higher than 0 SD score [1.8 SD score (1.5-2.1), P < 0.001]. Adiponectin levels were inversely related to triglyceride levels (r = -0.52, P < 0.03). There was a tendency to an inverse relation with body fat percentage and body mass index, but no correlation with fasting insulin or glucose levels, the insulin to glucose ratio, or homeostasis model assessment index. During GH treatment, adiponectin levels increased significantly and did not change in randomized controls. Conclusion: Adiponectin levels were increased, and inversely associated with triglyceride levels, in prepubertal, not overweight PWS children, although they had a relatively high body fat percentage. During GH treatment, adiponectin levels further increased, whereas no change was found in the controls, which is reassuring with respect to the development of insulin resistance during GH treatment. Copyright

The structural equation modeling technique did not show a response shift, contrary to the results of the then test and the individualized approaches (Article)

2007-04-01T00:00:00Z

A prospective study of the impact of genetic susceptibility testing for BRCA1/2 or HNPCC on family relationships (Article)

2007-04-01T00:00:00Z

This study assessed the impact of genetic testing for cancer susceptibility on family relationships and determinants of adverse consequences for family relationships. Applicants for genetic testing of a known familial pathogenic mutation in BRCA1/2 or a HNPCC related gene (N=271) rated the prevalence and nature of changes in family relationships, familial difficulties and conflicts due to genetic testing 6 months after receiving the test result. The level of family functioning, differentiation from parents, support and familial communication style regarding hereditary cancer were assessed before receiving the test result. Genetic testing affected some family relationships in a positive way (37%), i.e. by feeling closer, improved communication and support, more appreciation of the relative and relief of negative test result. A minority reported unwanted changes in relationships (19%), problematic situations (13%) or conflicts (4%). Adverse effects comprised feelings of guilt towards children and carrier siblings, imposed secrecy and communication problems. Predictors of adverse consequences on family relationships were reluctance to communicate about hereditary cancer with relatives and disengaged-rigid or enmeshed-chaotic family functioning. Open communication between relatives should be stimulated because a lack of open communication may be an important determinant of familial adverse effects. Copyright

Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: A prospective study (Article)

2007-01-01T00:00:00Z

This study examined prospectively the contribution of family functioning, differentiation to parents, family communication and support from relatives to psychological distress in individuals undergoing genetic susceptibility testing for a known familial pathogenic BRCA1/2 or Hereditary nonpolyposis colorectal cancer-related mutation. Family functioning, differentiation to parents, hereditary cancer-related family communication and perceived support from relatives were assessed in 271 participants for genetic testing before test result disclosure. Hereditary cancer distress (assessed by the Impact of Event Scale) and cancer worry (assessed by the Cancer Worry Scale) were assessed before, 1 week after, and 6 months after test result disclosure. Participants reporting more cancer-related distress over the study period more frequently perceived the communication about hereditary cancer with relatives as inhibited, the nuclear family functioning as disengaged-rigid or enmeshed-chaotic, the support from partner as less than adequate and the relationship to mother as less differentiated. Especially, open communication regarding hereditary cancer and partner support may be important buffers against hereditary cancer distress. Identifying individuals with insufficient sources of support and addressing the family communication concerning hereditary cancer in genetic counseling may help the counselee to adjust better to genetic testing.

Comparison of individuals opting for BRCA1/2 or HNPCC genetic susceptibility testing with regard to coping, illness perceptions, illness experiences, family system characteristics and hereditary cancer distress (Article)

2007-01-01T00:00:00Z

Objective: To study differences between individuals opting for genetic cancer susceptibility testing of a known familial BRCA1/2 and HNPCC related germline mutation. Methods: Coping, illness perceptions, experiences with cancer in relatives and family system characteristics were assessed in 271 applicants for genetic testing before test result disclosure. Hereditary cancer distress, worry and cancer risk perception were assessed before, 1 week after, and 6 months after disclosure. Results: Individuals from BRCA1/2 and HNPCC mutation families did not differ with regard to the number of experiences with cancer in relatives, grief symptoms, the course of cancer distress, worry and risk perception through time and most illness perceptions, coping responses and family characteristics. Individuals from BRCA1/2 families perceived hereditary cancer as more serious. They reported more frequently a passive coping style, cancer worry and a less open communication with their partner and children. Conclusion: Besides subtle differences, psychological mechanisms may be mainly identical in individuals opting for BRCA1/2 and HNPCC susceptibility testing. Practice implications: Based on our findings, using a similar counseling approach for individuals opting for BRCA1/2 or HNPCC genetic susceptibility testing is justified. In this approach, attention should be directed more to individual aspects than to the type of disorder.

Prognostic factors for hereditary cancer distress six months after BRCA1/2 or HNPCC genetic susceptibility testing (Article)

2007-01-01T00:00:00Z

This study explored predictors for hereditary cancer distress six months after genetic susceptibility testing for a known familial BRCA1/2 or HNPCC related mutation, in order to gain insight into aspects relevant for the identification of individuals needing additional psychosocial support. Coping, illness representations, experiences with cancer in relatives and family system characteristics were assessed in 271 applicants for genetic testing before result disclosure. Hereditary cancer distress was assessed prospectively up to six months after disclosure. Regression analysis revealed that the pretest level of distress, complicated grief, the number of affected first-degree relatives and strong emotional illness representations were factors that best explained hereditary cancer distress. Other significant predictors were illness coherence, passive coping, distraction seeking, being aged <13 years when a parent was affected by cancer and family communication. Individuals who may benefit from additional support may be identified before result disclosure using a short instrument assessing the relevant aspects.

The course of distress in women at increased risk of breast and ovarian cancer due to an (identified) genetic susceptibility who opt for prophylactic mastectomy and/or salpingo-oophorectomy (Article)

2007-01-01T00:00:00Z

The levels and course of psychological distress before and after prophylactic mastectomy (PM) and/or prophylactic salpingo-oophorectomy (PSO) were studied in a group of 78 women. General distress was measured through the hospital anxiety and depression scale (HADS), cancer-related distress using the impact of events scale (IES). Measurement moments were baseline (2-4 weeks prior to prophylactic surgery), and 6 and 12 months post-surgery. After PM, anxiety and cancer-related distress were significantly reduced, whereas no significant changes in distress scores were observed after PSO. At one year after prophylactic surgery, a substantial amount of women remained at clinically relevant increased levels of cancer-related distress and anxiety. We conclude that most women can undergo PM and/or PSO without developing major emotional distress. More research is needed to further define the characteristics of the women who continue to have clinically relevant increased scores after surgery, in order to offer them additional counselling.

Intelligence and psychosocial functioning during long-term growth hormone therapy in children born small for gestational age. (Article)

2004-11-01T00:00:00Z

Short stature is not the only problem faced by small for gestational age (SGA) children. Being born SGA has also been associated with lowered intelligence, poor academic performance, low social competence, and behavioral problems. Although GH treatment in short children born SGA can result in a normalization of height during childhood, the effect of GH treatment on intelligence and psychosocial functioning remains to be investigated. We show the longitudinal results of a randomized, double-blind, GH-dose response study initiated in 1991 to follow growth, intelligence quotient (IQ), and psychosocial functioning in SGA children during long-term GH treatment. Patients were assigned to one of two treatment groups (1 or 2 mg GH/m(2) body surface.d, or approximately 0.035 or 0.07 mg/kg.d). Intelligence and psychosocial functioning were evaluated at start of GH treatment (n = 74), after 2 yr of GH treatment (n = 76), and in 2001 (n = 53). IQ was assessed by a short-form Wechsler Intelligence Scale for Children-Revised or Wechsler Adult Intelligence Scale (Block-design and Vocabulary subtests). Behavioral problems were measured by the Achenbach Child Behavior Checklist or Young Adult Behavior Checklist, and self-perception was measured by the Harter Self-Perception Profile. Mean (sem) birth length sd score was -3.6 (0.2), mean age and height at start was 7.4 (0.2) yr and -3.0 (0.1) sd score, respectively, mean duration of GH treatment was 8.0 (0.2) yr, and mean age in 2001 was 16.5 (0.3) yr. After 2 yr of GH treatment, 96% of both GH groups showed a height gain sd score of 1 sd from the start of treatment or more, resulting in a normal height (i.e. height >/= -2.0 sd for age and sex) in 70% of the children. In 2001, 48 (91%) of the 53 children participating in this study had reached a normal height. Block-design s-score and the estimated total IQ significantly increased (P < 0.001 and P < 0.001, respectively) from scores significantly lower than Dutch peers at start (P < 0.001 and P < 0.001, respectively) to comparable scores in 2001. The increase over time for the Vocabulary s-score was not significant. Internalizing Behavior sd scores remained comparable to Dutch peers, whereas Externalizing Behavior sd scores and Total Problem Behavior sd scores improved significantly during GH therapy (P < 0.01 and P < 0.05, respectively) to scores comparable to Dutch peers. Self-perception sd scores improved from start of GH treatment until 2001 (P < 0.001) to scores significantly higher than Dutch peers (P < 0.05). No significant differences between the two GH dosage groups were found. Improvement in Externalizing and Total Problem Behavior sd scores over time was significantly related to change in height sd score (P < 0.05 and P < 0.01, respectively), whereas scores over time for Vocabulary, Block-design, Internalizing, or total Harter Self-Perception score were not related to change in height sd scores.In conclusion, parallel to a GH-induced catch-up growth in adolescents born SGA, IQ, behavior, and self-perception showed a significant improvement over time from scores below average to scores comparable to Dutch peers. In addition, children whose height over time became closer to that of their peers showed less problem behavior.

Routine morphine infusion in preterm newborns who received ventilatory support: a randomized controlled trial. (Article)

2003-11-12T00:00:00Z

CONTEXT: Newborns admitted to neonatal intensive care units (NICUs) undergo a variety of painful procedures and stressful events. Because the effect of continuous morphine infusion in preterm neonates has not been investigated systematically, there is confusion regarding whether morphine should be used routinely in this setting. OBJECTIVE: To evaluate the effects of continuous intravenous morphine infusion on pain responses, incidence of intraventricular hemorrhage (IVH), and poor neurologic outcome (severe IVH, periventricular leukomalacia, or death). DESIGN, SETTING, AND PATIENTS: A randomized, double-blind, placebo-controlled trial conducted between December 2000 and October 2002 in 2 level III NICUs in the Netherlands of 150 newborns who had received ventilatory support (inclusion criteria: postnatal age younger than 3 days and ventilation for less than 8 hours; exclusion criteria: severe asphyxia, severe IVH, major congenital malformations, and administration of neuromuscular blockers). INTERVENTIONS: Intravenous morphine (100 microg/kg and 10 microg/kg per hour) or placebo infusion was given for 7 days (or less because of clinical necessity in several cases). MAIN OUTCOME MEASURES: The analgesic effect of morphine, as assessed using validated scales; the effect of morphine on the incidence of IVH; and poor neurologic outcome. RESULTS: The analgesic effect did not differ between the morphine and placebo groups, judging from the following median (interquartile range) pain scores: Premature Infant Pain Profile, 10.1 (8.2-11.6) vs 10.0 (8.2-12.0) (P =.94); Neonatal Infant Pain Scale, 4.8 (3.7-6.0) vs 4.8 (3.2-6.0) (P =.58); and visual analog scale, 2.8 (2.0-3.9) vs 2.6 (1.8-4.3) (P =.14), respectively. Routine morphine infusion decreased the incidence of IVH (23% vs 40%, P =.04) but did not influence poor neurologic outcome (10% vs 16%, P =.66). In addition, analyses were adjusted for the use of additional open-label morphine (27% of morphine group vs 40% of placebo group, P =.10). CONCLUSIONS: Lack of a measurable analgesic effect and absence of a beneficial effect on poor neurologic outcome do not support the routine use of morphine infusions as a standard of care in preterm newborns who have received ventilatory support. Follow-up is needed to evaluate the long-term effects of morphine infusions on the neurobehavioral outcomes of prematurity.

Major surgery within the first 3 months of life and subsequent biobehavioral pain responses to immunization at later age: a case comparison study (Article)

2003-01-01T00:00:00Z

OBJECTIVES: Pain exposure during early infancy affects the pain perception beyond infancy into childhood. The objective of this study was to examine whether major surgery within the first 3 months of life in combination with preemptive analgesia alters pain responses to immunization at 14 or 45 months and to assess whether these alterations are greater in toddlers with a larger number of negative hospital experiences. METHODS: Two groups of 50 toddlers each were compared: index group and control group. All index toddlers had participated within the first 3 months of their life in a randomized, clinical trial that evaluated the efficacy of preemptive morphine administration for postoperative analgesia. The controls were matched by type of immunization and community health care pediatrician. Pain reactions were recorded at routine immunization at either 14 (measles-mumps-rubella immunization) or 45 months (diphtheria-tetanus-trivalent polio immunization) of age. Outcome measures were facial reaction, coded by the Maximum Discriminative Facial Movement Coding System; heart rate (HR); and cortisol saliva concentration. Negative hospital experiences included number of operations requiring postoperative morphine administration, cumulative Therapeutic Intervention Scoring System scores, and length of stay in the intensive care unit or total hospitalization days. RESULTS: No differences were found between the index and control groups in the facial display of pain, anger, or sadness or in physiologic parameters such as HR and cortisol concentrations. Intragroup analyses of the index group showed that after measles-mumps-rubella vaccination, the number of negative hospital experiences correlated positively with the facial responsiveness and negatively with HR responses. No effect was seen after diphtheria-tetanus-trivalent polio immunization. CONCLUSIONS: Major surgery in combination with preemptive analgesia within the first months of life does not alter pain response to subsequent pain exposure in childhood. Greater exposure to early hospitalization influences the pain responses after prolonged time. These responses, however, diminish after a prolonged period of nonexposure.

Chronic pain and its impact on quality of life in adolescents and their families (Article)

2001-01-01T00:00:00Z

OBJECTIVE: To study chronic pain not caused by somatic disease in adolescents and the effect of pain on the quality of life of the adolescents and their families. METHODS: One hundred twenty-eight youngsters (12-18 years) who had reported chronic pain kept a 3-week diary of their pain and completed a questionnaire on quality of life. Their mothers completed a questionnaire on the impact of their youngster's pain on the family. RESULTS: The most prevalent pains were limb pain, headache, abdominal, and back pain. The pain increased during the day, with the highest frequency around dinner time and the highest intensity around bedtime. Girls reported more intense and more frequent pain than boys. The higher the intensity and frequency of the pain, the lower the self-reported quality of life of the female or male adolescent, especially regarding psychological functioning (e.g. feeling less at ease), physical status (a greater incidence of other somatic complaints), and functional status (more impediments to leisure and daily activities). Chronic pain also had a negative impact on family life. The mothers reported restrictions, particularly in social life, and problems dealing with the stress of the adolescent's pain. CONCLUSIONS: Chronic pain, not caused by somatic disease, was present to a higher degree in girls; the pain increased during the day and had a negative impact on quality of life of the adolescents and the family. There is a need for future research aimed at identifying risk factors for chronic pain and pain-associated quality of life in children and adolescents.

Presymptomatic testing for BRCA1 and BRCA2: how distressing are the pre-test weeks? Rotterdam/Leiden Genetics Working Group (Article)

1999-01-01T00:00:00Z

Presymptomatic DNA testing for autosomal dominant hereditary breast/ovarian cancer (HBOC) became an option after the identification of the BRCA1 and BRCA2 genes in 1994-1995. Healthy female mutation carriers have a high lifetime risk for breast cancer (56-87%) or ovarian cancer (10-60%) and may opt for intensive breast and ovary surveillance or prophylactic surgery (mastectomy/oophorectomy).We studied general and cancer related distress in 85 healthy women with a 25% or 50% risk of being carrier of a BRCA1/BRCA2 gene mutation and 66 partners in the six to eight week period between genetic counselling/blood sampling and disclosure of the test result. Questionnaire and interview data are analysed. Associations are explored between levels of distress and (1) expected consequences of being identified as a mutation carrier, (2) personality traits, (3) sociodemographic variables, and (4) experiences related to HBOC.Mean pre-test anxiety and depression levels in women at risk of being a carrier and partners were similar to those of a normal Dutch population. In about 25% of those at risk of being a carrier and 10% of the partners, increased to high levels of general and cancer related distress were found. Increased levels of distress were reported by women who (1) anticipated an increase in problems after an unfavourable test outcome, (2) considered prophylactic mastectomy if found to be mutation carrier, (3) had an unoptimistic personality, (4) tended to suppress their emotions, (5) were younger than 40 years, and (6) were more familiar with the serious consequences of HBOC. Recently obtained awareness of the genetic nature of cancer in the family was not predictive of distress.The majority of the women and their partners experienced a relatively calm period before the disclosure of the test result and seemed to postpone distressing thoughts until the week of disclosure of the result. The low distress levels may partly be explained by the use of strategies to minimise the emotional impact of a possibly unfavourable test outcome. However, a minority reported feeling very distressed. Several factors were found to be predictive for increased distress levels.

Screening and diagnosis for the fragile X syndrome among the mentally retarded: an epidemiological and psychological survey. Collaborative Fragile X Study Group (Article)

1997-01-01T00:00:00Z

The fragile X syndrome is an X-linked mental retardation disorder caused by an expanded CGG repeat in the first exon of the fragile X mental retardation (FMR1) gene. Its frequency, X-linked inheritance, and consequences for relatives all prompt for diagnosis of this disorder on a large scale in all affected individuals. A screening for the fragile X syndrome has been conducted in a representative sample of 3,352 individuals in schools and institutes for the mentally retarded in the southwestern Netherlands, by use of a brief physical examination and the DNA test. The attitudes and reactions of (non)consenting parents/guardians were studied by (pre- and posttest) questionnaires. A total of 2,189 individuals (65%) were eligible for testing, since they had no valid diagnosis, cerebral palsy, or a previous test for the FMR1 gene mutation. Seventy percent (1,531/2,189) of the parents/guardians consented to testing. Besides 32 previously diagnosed fragile X patients, 11 new patients (9 males and 2 females) were diagnosed. Scoring of physical features was effective in preselection, especially for males (sensitivity .91 and specificity .92). Major motives to participate in the screening were the wish to obtain a diagnosis (82%), the hereditary implications (80%), and the support of research into mental retardation (81%). Thirty-four percent of the parents/guardians will seek additional diagnostic workup after exclusion of the fragile X syndrome. The prevalence of the fragile X syndrome was estimated at 1/ 6,045 for males (95% confidence interval 1/9,981-1/ 3,851). On the basis of the actual number of diagnosed cases in the Netherlands, it is estimated that >50% of the fragile X cases are undiagnosed at present.

Multimodal therapy in an inpatient setting (Article)

1986-12-01T00:00:00Z

Inpatient Multimodal Therapy (imt) is a residential treatment program, lasting a maximum of 36 weeks, for patients with severe neurotic symptoms. A group of 44 chronic obsessive-compulsive patients and a group of 40 chronic phobic patients were treated in order to assess the outcome and the process of treatment and to identify prognostic factors associated with the effect. At follow-up-on average, eight months after discharge-it was found that 60% had improved, 32% had remained the same, and 8% had deteriorated, indicating that, in general, the treatment was beneficial. That these effects were long-lasting is supported by the fact that, at follow-up, 78% of all patients were no longer receiving treatment, 18% were receiving outpatient or day treatment, and 4% were receiving inpatient treatment. Phobic patients appear to have gained more from the multimodal approach than did obsessive-compulsive patients, as indicated by the fact that the severity of symptoms decreased as they improved in rational thinking, assertiveness, and arousal. By contrast, obsessive-compulsive patients relapsed more than phobic patients did. This was attributed to the fact that the former gained less from the rational-emotive training, denied problems with assertiveness, and did not practice the acquired relaxation skills. It further appeared that a favorable outcome could be induced in patients who (1) expressed relatively mild symptoms in this otherwise severe group, (2) reported relatively few additional complaints, (3) could clearly indicate interpersonal problems, and (4) did not use psychotropic drugs. These prognostic factors are so widespread that not much weight can be ascribed to them. Yet they are useful for indication of imt until better predictors are found.

Motivatie voor psychotherapie : een empirische verkenning (Doctoral Thesis)

1982-06-18T00:00:00Z

In het voorstadium van dit onderzoek, nl. tijdens het genereren en het formuleren van de onderzoeksvraag, werd als onderwerp overwogen: indicatiestelling voor psychotherapie. Hoe komt een beslissing tot stand om voor een patiënt al dan niet psychotherapie te indiceren? Wij zijn echter van deze vraagstelling afgestapt, vooral doordat deze te weinig ingeperkt is. Wij hebben ons gericht op een onderwerp dat een of meer essentiële ingrediënten met betrekking tot indicatiestelling voor psychotherapie omvat. Dit bleek niet moeilijk te zijn, als men uitgaat van de stelling dat positieve motivatie van de patiënt voor therapie een belangrijke voorwaarde is voor een succesvolle behandeling (zie onder meer Appelbaum, 1972; Sifneos, 1972; Strupp, 1972; Meltzoff en Kornreich, 1970). Derhalve hebben wij patiënts motivatie voor psychotherapie als onderwerp van deze studie gekozen. Motivatie manifesteert zich in de interactie tussen therapeut en patiënt en de therapeut verdisconteert zijn oordeel over de motivatie van de patiënt in de indicatiestelling. In dit onderzoek gaan wij uit van de therapeut als informatiebron. Het onderzoek is erop gericht zicht te krijgen op het construct "motivatie" voor psychotherapie; daarbij worden de factoren opgespoord die een rol spelen in de oordeelsvorming van de therapeut betreffende de motivatie van de patiënt. Deze tweeledige doelstelling kan niet stringent worden aangehouden, omdat niet altijd vaststaat of een bepaalde variabele als een indicator fungeert of dient te worden beschouwd als een eperationalisatie van het construct "motivatie". Na de literatuur over motivatie voor psychotherapie te hebben verkend, is ons gebleken dat in empirisch-psychologisch opzicht het onderzoeksterrein relatief onbetreden is. Om dit terrein op systematische wijze te ontginnen, richten wij ons op·het opsporen van relevante factoren en het empirisch schatten van het gewicht van deze factoren met betrekking tot het oordeel van de therapeut over motivatie; inherent hieraan is de bepaling van de structuur c.q. complexiteit van desbetreffende factoren. In concrete termen geformuleerd: therapeut A vindt een bepaalde patiënt gemotiveerd voor therapie omdat deze denkt in termen van psychologische problemen, therapeut B vindt een patiënt gemotiveerd indien hij zich wil houden aan de voor hem noodzakelijke en gewenste voorwaarden voor therapie, therapeut C acht een patiënt gemotiveerd vanwege de (hoge) lijdensdruk. Enkele voorbeelden van een negatief oordeel over motivatie zouden kunnen zijn: patiënt X wil (eigenlijk) alleen een medicamenteuze behandeling terwijl hij bovendien moeite heeft om actief tijdens de behandeling mee te werken, patiënt Y heeft als zijn wens (impliciet of expliciet) te kennen gegeven dat de therapeut bepaalde moeilijke beslissingen fiatteert, terwijl hij bovendien weinig vertrouwen in de therapiemethode heeft. Het onderzoek is voornamelijk verkennend van karakter. Het leek daarom gewenst het onderzoek te doen plaatsvinden in een klein aantal psychotherapeutische instituten met het doel na te gaan hoe het er in de dagelijkse praktijk aan toegaat. Dit impliceert dat er geen hypothesen zullen worden getoetst. De kern van het onderzoek draait in feite om de beantwoording van de vraag: Kunnen er factoren worden aangewezen welke van belang zijn in het oordeel van de therapeut dat een bepaalde patiënt gemotiveerd dan wel ongemotiveerd voor psychotherapeutische behandeling is?