<?xml version="1.0" encoding="UTF-8" standalone="no" ?>
<rss version="2.0">
  <channel>
    <title>Passchier, J.</title>
    <link>http://repub.eur.nl/res/aut/1954/</link>
    <description>List of Publications</description>
    <language>en</language>
    <image>
      <url>http://repub.eur.nl/static-eur/img/logo.png</url>
      <title>RePub, Erasmus University Rotterdam</title>
      <link>http://repub.eur.nl</link>
    </image>
    <item>
      <title>Long-term psychological functioning of adults with severe congenital facial disfigurement (Article)</title>
      <link>http://repub.eur.nl/res/pub/34912/</link>
      <pubDate>2012-01-01T00:00:00Z</pubDate>
      <description>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 </description>
    </item> <item>
      <title>The influence of maternal vulnerability and parenting stress on chronic pain in adolescents in a general population sample: The TRAILS study (Article)</title>
      <link>http://repub.eur.nl/res/pub/26598/</link>
      <pubDate>2011-06-27T00:00:00Z</pubDate>
      <description>Investigating possible psychosocial predictors of unexplained chronic pain in adolescents is crucial in understanding its development and prevention. A general population sample of adolescents (n = 2230) from the TRAILS cohort study was investigated longitudinally to assess the influence of maternal vulnerability, in terms of anxiety, depression and stress, and parenting stress at age 10-12 years, on the presence of chronic pain at age 12-15 years. Of these adolescents, 269 (12.9%) reported experiencing chronic pain, of which 77% reported severe chronic pain and 22% reported multiple chronic pain. Maternal anxiety, maternal stress and higher levels of parenting stress were related to chronic pain at a later age. Subgroup analyses showed similar results for adolescents with severe chronic pain. Mediation analyses indicated that parenting stress mediates the effect between maternal anxiety, or stress, and chronic pain. The findings suggest that interventions to diminish maternal feelings of anxiety and stress, while in turn adjusting maternal behaviour, may prevent the development of chronic pain in adolescence. </description>
    </item> <item>
      <title>Somatic complaints and social competence predict success in childhood overweight treatment (Article)</title>
      <link>http://repub.eur.nl/res/pub/26705/</link>
      <pubDate>2011-06-01T00:00:00Z</pubDate>
      <description>Objective. To determine baseline predictors of treatment success in terms of Body Mass Index-Standard Deviation Scores (BMI-SDS) in a multidisciplinary family-based behavioural lifestyle intervention for overweight and obese children. Methods. Overweight and obese children (N = 248; age 814 years) and their caregivers participated in a prospective study and attended a lifestyle intervention. Baseline data assessment included anthropometrics, demographics, breakfast behaviour, competence and behavioural problems (Child Behaviour Checklist [CBCL]), family functioning (Family Adaptability and Cohesion Evaluation Scales [FACES] III), and personality (Dutch Personality Questionnaire-Youth [NPV-J]). BMI-SDS was measured at start and after 3, 9, and 12 months of treatment. Mixed modelling was used for analysis. Results. Greater BMI-SDS reductions over the course of one year were found in children with Caucasian parents, with lower baseline BMI-SDS, and higher CBCL-social competence scores. Furthermore, children with non-overweight parents, younger children, and children with lower CBCL-somatic scores were more successful in BMI-SDS reduction. No effects on treatment success were found for the number or position of siblings, having divorced parents or a working mother, educational level of the parents, breakfast behaviour, family functioning, and personality. Conclusions. These results suggest that screening for baseline characteristics in childhood obesity treatment could identify who will benefit most from a paediatric lifestyle intervention. Tailored programs should be developed and the treatment team should focus on children who are less successful in achieving weight reductions. Future research should study by which mechanisms somatic complaints and social competence influence treatment success. </description>
    </item> <item>
      <title>Determinants and outcome of unsuccessful referral after positive screening in a large birth-cohort study of population-based vision screening (Article)</title>
      <link>http://repub.eur.nl/res/pub/31449/</link>
      <pubDate>2011-06-01T00:00:00Z</pubDate>
      <description>Purpose: The efficacy of population-based vision screening is hampered by unsuccessful referral after a positive screening test. We studied the nature and causes of unsuccessful referral in a 7-year birth cohort study of vision screening in Rotterdam, the Netherlands. Methods: All parents of children who had been unsuccessfully referred were asked whether they recalled the referral. Reasons for noncompliance, if any, were identified using semi-structured interviews. Screening records were checked for written evidence of the referral. The parents' fluency in Dutch and their socioeconomic status were also assessed. Results: Of the 561 screen-positive children, 129 (23%) had not been referred successfully. For the current study, 97 parents were successfully contacted. Of these, 14 parents had been willingly noncompliant and 83 said they were unaware of the referral, with 47% having poor to moderate fluency in Dutch. In 53 cases, the screening charts contained no written evidence of any referral. Amblyopia was identified in 3 of the unsuccessful referrals. Conclusions: In this population-based screening program, 1 of 4 positively screened children was not successfully referred. Apart from parental noncompliance, the unsuccessful referrals can be explained by miscommunication, deficient documentation, and physician noncompliance with screening guidelines. An effective monitoring feedback system may improve the efficacy of child vision screening. </description>
    </item> <item>
      <title>Headache: The placebo effects in the control groups in randomized clinical trials; An analysis of systematic reviews (Article)</title>
      <link>http://repub.eur.nl/res/pub/33678/</link>
      <pubDate>2011-06-01T00:00:00Z</pubDate>
      <description>Objective: The purpose of this study is to describe the effects in the placebo and "no treatment" arms in trials with headache patients. Method: This is a secondary analysis of randomized controlled trials from 8 systematic reviews and selected trials with a "no treatment" or placebo control group. The different types of "no treatment" and placebo interventions were assessed and classified into 6 subgroups. The analyses were carried out according to type of outcome variable. Results: In total, 119 studies were included (7119 participants). The mean recovery rate in all control groups was 35.7%. Significantly more participants recovered in control groups of pharmacological studies than in nonpharmacological studies: 38.5% vs 15.0%, respectively. Adults were more likely to recover in nonpharmacological studies and children in pharmacological studies. Conclusions: The mean recovery rate in the control groups was 36%. The recovery rate varied substantially between type of intervention and patients. </description>
    </item> <item>
      <title>The association between psychological factors and the development of complex regional pain syndrome type 1 (CRPS1) - A prospective multicenter study (Article)</title>
      <link>http://repub.eur.nl/res/pub/25545/</link>
      <pubDate>2011-04-04T00:00:00Z</pubDate>
      <description>The objective of this study was to investigate the association between psychological factors and complex regional pain syndrome type 1 (CRPS1). A prospective multicenter cohort study was performed involving the emergency room of three hospitals, and patients age 18 years or older, with a single fracture, were included in the study. At baseline (T0), participants completed a questionnaire covering demographic, psychological (Symptom Checklist-90), and medical variables. At plaster removal (T1) and at T2, the participants completed a questionnaire addressing symptoms of CRPS1. Psychological factors that were analysed were agoraphobia, depression, somatization, insufficiency, (interpersonal) sensitivity, insomnia, and life events. In total, 596 consecutive patients were included in the study, and 7.0% were diagnosed with CRPS1. None of the psychological factors predicted the development of CRPS1. The scores on the Symptom Checklist-90 subscales fell into the range of the general population and were, in most cases, average or below average when compared with those of pain patients or psychiatric patients. No empirical evidence supports a diagnosis of CRPS1 patients as psychologically different, and the current results indicate that there is no association between psychological factors and CRPS1. </description>
    </item> <item>
      <title>The influence of attachment and temperament on venipuncture distress in 14-month-old infants: The Generation R Study (Article)</title>
      <link>http://repub.eur.nl/res/pub/22829/</link>
      <pubDate>2011-04-01T00:00:00Z</pubDate>
      <description>Objective: This study examined the effects of attachment and temperament on infant distress during venipuncture. Method: The study was embedded in the Generation R Study, a prospective population-based study. Two different research procedures (i.e., blood sampling and the Ainsworth Strange Situation Procedure) yielded measures of venipuncture distress and attachment security and disorganization in 246 infants aged 14 months. Four temperament traits (distress to limitations, fear, recovery from distress, and sadness) were assessed using the maternally reported Infant Behavior Questionnaire - Revised, at the age of 6 months. Results: There were no differences between mean levels of distress during venipuncture in infants classified as having insecure attachment, but there was a trend for disorganized attachment. The temperament traits were not related to distress. However, children with a disorganized attachment and higher temperamental fear had more venipuncture distress. Conclusion: When different risk factors are present simultaneously, infant distress is heightened.</description>
    </item> <item>
      <title>Sociocultural and psychological determinants in migrants for noncompliance with occlusion therapy for amblyopia (Article)</title>
      <link>http://repub.eur.nl/res/pub/33892/</link>
      <pubDate>2011-03-14T00:00:00Z</pubDate>
      <description>Background: Compliance with occlusion therapy for amblyopia in children is low when their parents have a low level of education, speak Dutch poorly, or originate from another country. We determined how sociocultural and psychological determinants affect compliance. Methods: Included were amblyopic children between the ages of 3 and 6, living in low socio-economic status (SES) areas. Compliance with occlusion therapy was measured electronically. Their parents completed an oral questionnaire, based on the "Social Position &amp; Use of Social Services by Migrants and Natives" questionnaire that included demographics and questions on issues like education, employment, religion and social contacts. Parental fluency in Dutch was rated on a five-point scale. Regression analysis was used to describe the relationship between the level of compliance and sociocultural and psychological determinants. Results: Data from 45 children and their parents were analyzed. Mean electronically measured compliance was 56 ± 44 percent. Children whose parents had close contact with their neighbors or who were highly dependent on their family demonstrated low levels of compliance. Children of parents who were members of a club and who had positive conceptualizations of Dutch society showed high levels of compliance. Poor compliance was also associated with low income, depression, and when patching interfered with the child's outdoor activity. Religion was not associated with compliance. Conclusions: Poor compliance with occlusion therapy seems correlated with indicators of social cohesion. High social cohesion at micro level, i.e., family, neighbors and friends, and low social cohesion on macro level, i.e., Dutch society, are associated with noncompliance. However, such parents tend to speak Dutch poorly, so it is difficult to determine its actual cause. </description>
    </item> <item>
      <title>Prognostic factors for persistence of chronic abdominal pain in children (Article)</title>
      <link>http://repub.eur.nl/res/pub/23380/</link>
      <pubDate>2011-02-01T00:00:00Z</pubDate>
      <description>Objectives: The aim of the study was to identify prognostic factors for the persistence of chronic abdominal pain (CAP) in children. Materials and Methods: For this systematic review, MEDLINE, EMBASE, and PsycINFO were searched up to June 2008 for prospective follow-up studies of pediatric CAP as defined by the criteria of Apley, von Baeyer, or the Rome committee. The outcome measure of interest was persistence of CAP. Persistent CAP was considered only when the abdominal pain of children with CAP persisted during follow-up at the same level of frequency and severity. For each study the risk for bias was assessed. The evidence for prognostic factors was summarized according to a best-evidence synthesis. Results: Eight studies, which examined 17 prognostic factors, were included. Moderate evidence was found that having a parent with gastrointestinal symptoms predicts the persistence of CAP. Strong evidence was found for no association between female sex and the duration of CAP, and moderate evidence that the severity of abdominal pain does not predict persistence of CAP. There is conflicting evidence as to whether psychological factors prevent, or have no relation with, persistence of Cap. Conclusions: Because there are few prognostic follow-up studies on pediatric CAP, the evidence for prognostic factors is limited. Physicians should ask about parental gastrointestinal problems because this is a risk factor for persistence of CAP in children. The hypothesis that psychological factors of the child predict persistence of CAP is not supported by evidence from the follow-up studies.</description>
    </item> <item>
      <title>Treatment-disrupting behaviors during psychotherapy of patients with personality disorders: The predictive power of psychodynamic personality diagnosis (Article)</title>
      <link>http://repub.eur.nl/res/pub/31676/</link>
      <pubDate>2011-01-01T00:00:00Z</pubDate>
      <description>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 </description>
    </item> <item>
      <title>Predictors of participant dropout at various stages of a pediatric lifestyle program (Article)</title>
      <link>http://repub.eur.nl/res/pub/33567/</link>
      <pubDate>2011-01-01T00:00:00Z</pubDate>
      <description>OBJECTIVE: To evaluate baseline predictors of drop out at various stages in a lifestyle intervention for overweight and obese children. PATIENTS AND METHODS: Children and their families (N = 248) (aged 8-14 years) attended a lifestyle intervention. At baseline, we assessed anthropometric and demographic data, measured competence and behavioral problems, and family functioning. Dropout rates were analyzed at various stages in treatment with logistic regression analyses. RESULTS: Children who had mothers of non-white descent, who had higher BMI SDS, who participated in fewer activities, who did not have breakfast regularly, and who did not live in families with a static adaptability structure were more likely to drop out between 0 and 12 months. Different characteristics predicted dropout at various stages of treatment: (1) having an ethnic minority status and being older predicted dropping out between 0 and 3 months; (2) having a nonwhite mother, participating in fewer activities, having higher delinquency scores, and not presenting the family as extremely positive predicted dropping out between 3 and 9 months; and (3) having a higher BMI SDS, having fewer social problems, and not living in families with a static adaptability structure predicted dropping out between 9 and 12 months of treatment. CONCLUSIONS: The results indicate diffrerent characteristics predict dropping out from a pediatric lifestyle program at various stages in treatment. These findings highlight the need for tailored interventions that target different characteristics at various stages of treatment to reduce drop out rates. Copyright </description>
    </item> <item>
      <title>Medium-dose riboflavin as a prophylactic agent in children with migraine: A preliminary placebo-controlled, randomised, double-blind, cross-over trial (Article)</title>
      <link>http://repub.eur.nl/res/pub/27979/</link>
      <pubDate>2010-12-01T00:00:00Z</pubDate>
      <description>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. </description>
    </item> <item>
      <title>Turkish female immigrants' intentions to participate in preconception carrier screening for hemoglobinopathies in the Netherlands: An empirical study (Article)</title>
      <link>http://repub.eur.nl/res/pub/28617/</link>
      <pubDate>2010-12-01T00:00:00Z</pubDate>
      <description>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 </description>
    </item> <item>
      <title>Tailoring a cognitive behavioural model for unexplained physical symptoms to patient's perspective: A bottom-up approach (Article)</title>
      <link>http://repub.eur.nl/res/pub/28356/</link>
      <pubDate>2010-11-01T00:00:00Z</pubDate>
      <description>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. </description>
    </item> <item>
      <title>Satisfaction with facial appearance and its determinants in adults with severe congenital facial disfigurement: A case-referent study (Article)</title>
      <link>http://repub.eur.nl/res/pub/28641/</link>
      <pubDate>2010-10-01T00:00:00Z</pubDate>
      <description>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. </description>
    </item> <item>
      <title>Psychopathology in children and adolescents with migraine in clinical studies: A systematic review (Article)</title>
      <link>http://repub.eur.nl/res/pub/21045/</link>
      <pubDate>2010-08-01T00:00:00Z</pubDate>
      <description>BACKGROUND: In past decades, numerous population- and hospital-based studies have revealed a relationship between migraine or headache and psychopathology in children. OBJECTIVE: To describe and assess all clinical studies on the prevalence and manifestations of psychological functioning and psychiatric comorbidity in children with migraine and to provide recommendations for its diagnosis and treatment. METHODS: A literature search was performed in Medline, Embase, PsycINFO, and the Cochrane Database to identify clinical studies that assessed psychological functioning and/or psychiatric comorbidity in children with migraine. Trial quality was assessed according to a standardized and validated set of criteria. RESULTS: Seven studies met our inclusion criteria. Evidence assessment was performed by using the best-evidence synthesis method of Slavin. On the basis of this method, we found strong evidence that children with migraine in a clinical setting do not exhibit more withdrawn behavior, do not have more thought problems, do not have more social problems, and do not exhibit more delinquent or aggressive behavior than healthy children. Furthermore, there is strong evidence that children with migraine have more somatic complaints and exhibit internalizing behavior which is, given the construct of the outcome measure used, a consequence of the nature of their disease rather than a sign of psychological dysfunctioning. Finally, compared with healthy children, there is limited evidence that children with migraine in a clinical setting are more frequently diagnosed with oppositional defiant disorder, and they are not more frequently diagnosed with attention-deficit/ hyperactivity disorder, conduct disorder, dysthymia, or depression. CONCLUSIONS: On the basis of this review, we conclude that children with migraine at referral to a specialist do not exhibit more psychological dysfunctioning and (to a lesser extent) do not exhibit more psychiatric comorbidity compared with healthy controls.</description>
    </item> <item>
      <title>Psychological well-being and sexarche in women with polycystic ovary syndrome (Article)</title>
      <link>http://repub.eur.nl/res/pub/27879/</link>
      <pubDate>2010-06-01T00:00:00Z</pubDate>
      <description>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. </description>
    </item> <item>
      <title>Childhood abdominal pain in primary care: Design and patient selection of the HONEUR abdominal pain cohort (Article)</title>
      <link>http://repub.eur.nl/res/pub/28513/</link>
      <pubDate>2010-04-15T00:00:00Z</pubDate>
      <description>Background: Abdominal pain in children is a common complaint presented to the GP. However, the prognosis and prognostic factors of childhood abdominal pain are almost exclusively studied in referred children. This cohort study aims at describing prognosis and prognostic factors of childhood abdominal pain in primary care. In this paper we describe methods used for data-collection and determine possible selective recruitment. Methods/Design. We conducted an observational, prospective cohort study with a 1-year follow-up. From May 2004 to March 2006, 53 Dutch GPs recruited consecutive children aged 4-17 years with a new episode of abdominal pain not preceded by a consultation for this complaint in the previous 3 months. Participants filled in standardized questionnaires, and faeces and urine were sampled. To evaluate selective recruitment, the electronic medical records of participating GPs were retrospectively searched for eligible non-included children. Discussion. This study allows us to describe prognosis and prognostic factors of childhood abdominal pain in primary care. A total of 305 children were included of whom 142 (46.6%) met predefined criteria for chronic/recurrent abdominal pain at presentation; from the total group of eligible children identified from the electronic medical record, 27% were included. The included children were significantly younger than non-included children (mean age 8.49 and 9.20 years). In proportion to identified eligible children, significantly less children diagnosed with "gastroenteritis" (6.8%) and significantly more children with "generalized abdominal pain" (39%) were included compared to the 27% that was expected. This cohort represents young school-aged children consulting GPs for a new episode of abdominal pain, not diagnosed as gastroenteritis. Almost half of them fulfil the criteria for chronic abdominal pain at presentation. </description>
    </item> <item>
      <title>Qualities and health of lay trainers with migraine for behavioral attack prevention (Article)</title>
      <link>http://repub.eur.nl/res/pub/27676/</link>
      <pubDate>2010-04-01T00:00:00Z</pubDate>
      <description>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. </description>
    </item> <item>
      <title>Determinants of somatic complaints in 18-month-old children: The generation R study (Article)</title>
      <link>http://repub.eur.nl/res/pub/27777/</link>
      <pubDate>2010-04-01T00:00:00Z</pubDate>
      <description>ObjectiveTo investigate the effect of child temperament, maternal psychologic symptoms, maternal chronic pain, and parenting stress on children's somatic complaints.MethodsThe study was embedded in the Generation R Study, a population-based cohort study. Child somatic complaints were assessed via mother-report in 5,171 children of 18 months of age. Questionnaires assessed maternal somatic symptoms, symptoms of depression, anxiety during pregnancy and 2 months after delivery, maternal chronic pain during pregnancy, parenting stress 18 months after birth, and mother-reported child temperament 6 months after birth, as the determinants.ResultsFearful temperament, temperamental falling reactivity, maternal somatic symptoms, anxiety symptoms, and parenting stress each independently and prospectively increased the likelihood of children's somatic complaints at 18 months of age.ConclusionsIn toddlers, temperament, maternal stress, and maternal somatic symptoms seem particularly important for the development of somatic complaints, but long-term research is needed to establish causality and predictive value of these factors. </description>
    </item> <item>
      <title>Effectiveness of pharmacotherapy for severe personality disorders: Meta-analyses of randomized controlled trials (Article)</title>
      <link>http://repub.eur.nl/res/pub/19323/</link>
      <pubDate>2010-01-01T00:00:00Z</pubDate>
      <description>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.</description>
    </item> <item>
      <title>Lack of benefit for prophylactic drugs of tension-type headache in adults: A systematic review (Article)</title>
      <link>http://repub.eur.nl/res/pub/24662/</link>
      <pubDate>2009-12-22T00:00:00Z</pubDate>
      <description>Objective. To assess the efficacy and tolerability of prophylactic drugs for chronic tension-type headache (TTH) in adults. Methods. We searched several databases from inception to August 2009. We selected randomized trials that reported the effects of prophylactic drugs in patients with TTH, with a pain measure (intensity, frequency, duration, improvement or index) as outcome measure. Two authors independently assessed risk of bias and extracted data from the original reports. A data synthesis was carried out according to the type of medication. Results. We included 44 trials (3399 patients), of which 15 (34.1%) were considered to be of low risk of bias. Main types of medications studied were antidepressants, muscle relaxants, benzodiazepines and vasodilator agents. Overall, antidepressants were no more effective than placebo, and there were no significant differences between different types of antidepressants. There was conflicting evidence about the effectiveness of benzodiazepines and vasodilator agents compared with placebo. Furthermore, there was limited evidence that propranolol had negative effects on depression in TTH patients, when compared with placebo or biofeedback. There was no evidence concerning the effectiveness of muscle relaxants alone or 5-HT receptor agonist compared with placebo. Conclusions. Overall, antidepressants were no more effective on headache intensity or frequency and analgesic use than placebo. Propranolol seemed to have negative effects on depression in TTH patients when compared with placebo or biofeedback. No evidence was found for the use of muscle relaxants alone or 5-HT receptor agonist. </description>
    </item> <item>
      <title>Psychological causes of non-compliance with electronically monitored occlusion therapy for amblyopia (Article)</title>
      <link>http://repub.eur.nl/res/pub/24884/</link>
      <pubDate>2009-11-01T00:00:00Z</pubDate>
      <description>Aim: To analyse psychological causes for low compliance with occlusion therapy for amblyopia. Method: In a randomised trial, the effect of an educational programme on electronically measured compliance had been assessed. 149 families who participated in this trial completed a questionnaire based on the Protection Motivation Theory after 8 months of treatment. Families with compliance less than 20% of prescribed occlusion hours were interviewed to better understand their cause for non-compliance. Results: Poor compliance was most strongly associated with a high degree of distress (p&lt;0.001), followed by low perception of vulnerability (p = 0.014), increased stigma (p = 0.017) and logistical problems with treatment (p = 0.044). Of 44 families with electronically measured compliance less than 20%, 28 could be interviewed. The interviews confirmed that lack of knowledge, distress and logistical problems resulted in non-compliance. Conclusion: Poor parental knowledge, distress and difficulties implementing treatment seemed to be associated with non-compliance. For the same domains, the scores were more favourable for families who had received the educational programme than for those who had not.</description>
    </item> <item>
      <title>The Distress Thermometer assessed in women at risk of developing hereditary breast cancer (Article)</title>
      <link>http://repub.eur.nl/res/pub/24119/</link>
      <pubDate>2009-10-01T00:00:00Z</pubDate>
      <description>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&lt;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 </description>
    </item> <item>
      <title>Utility and preliminary effects of online digital assistance (oda) for behavioral attack prevention in migraine (Article)</title>
      <link>http://repub.eur.nl/res/pub/17571/</link>
      <pubDate>2009-09-01T00:00:00Z</pubDate>
      <description>There were two objectives of this research. First was to establish the utility of online digital assistance (ODA), a generic software-based method designed to support behavioral training (BT) in migraine. The second was to test whether ODA can produce additional effects in BT. Utility (feasibility and acceptability) was based on 44 patients with migraine who received ODA as an adjuvant to BT delivered to small groups by lay trainers with migraine at home. ODA tracking files were used to determine ODA feasibility. Acceptability was assessed by a structured interview. To examine ODA effects, 31 patients with migraine who received ODA during BT and at 6 months' follow-up were compared with a matched group of 31 participants who received BT only. Feasibility was established based on minimal technical problems, good compliance, and successful execution of ODA. Acceptability was confirmed by positive participant responses concerning usefulness, supportiveness, and low burden. Finally, ODA participants did not mark better improvements considering migraine attack frequency, internal control, and migraine-specific quality of life compared to those that underwent BT only. ODA is feasible, well-accepted, and perceived to support self-care in 44 patients with migraine. The method is currently designed for these patients, but it can be easily adapted for other health settings. Whether ODA can induce higher gains remains to be established.</description>
    </item> <item>
      <title>Exploration of Concerns of Relatives During Continuous Palliative Sedation of Their Family Members with Cancer (Article)</title>
      <link>http://repub.eur.nl/res/pub/24437/</link>
      <pubDate>2009-09-01T00:00:00Z</pubDate>
      <description>Data on the experiences of relatives during continuous palliative sedation are scarce. Because these relatives may be the ones most closely involved with the patient, it is important to evaluate the possible burdens that they experience. We aimed to explore and evaluate concerns of relatives during continuous palliative sedation of their family members admitted to an acute palliative care unit. Through retrospective multidisciplinary record research, we obtained data on concerns of the relatives during the period that continuous palliative sedation took place. From October 2001 to October 2004, 45 patients died after starting continuous palliative sedation. In 51% of the cases, the relatives expressed concerns after starting the therapy. Concerns could be distinguished into three main themes: concerns about the aim of continuous palliative sedation (27%), concerns related to the well-being of the patient (29%), and concerns related to the well-being of relatives themselves (18%). Patient and sedation characteristics did not differ significantly between sedations in which relatives did and did not express concerns, except for the duration of the sedation. The median duration of the continuous palliative sedation when concerns were expressed was 46 hours, compared with 19.5 hours when this was not the case (P &lt; 0.05). Both the nature and extent of the concerns suggest that relatives are in need of continuous information and professional guidance during continuous palliative sedation of their family members. Availability of caregiver guidance and clear process documentation are crucial and indispensable in providing this. </description>
    </item> <item>
      <title>The effectiveness of a training for patients with unexplained physical symptoms: protocol of a cognitive behavioral group training and randomized controlled trial (Article)</title>
      <link>http://repub.eur.nl/res/pub/20859/</link>
      <pubDate>2009-07-01T00:00:00Z</pubDate>
      <description>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.</description>
    </item> <item>
      <title>Construct validation of the Amblyopia and Strabismus Questionnaire (A&amp;SQ) by factor analysis (Article)</title>
      <link>http://repub.eur.nl/res/pub/16851/</link>
      <pubDate>2009-06-08T00:00:00Z</pubDate>
      <description>Background: The Amblyopia and Strabismus Questionnaire (A&amp;SQ) was previously developed to assess quality of life (QoL) in amblyopia and/or strabismus patients. Here, factor analysis with Varimax rotation was employed to confirm that the questions of the A&amp;SQ correlated to dimensions of quality of life (QoL) in such patients. Methods: Responses on the A&amp;SQ from three groups were analyzed: healthy adults (controls) (n = 53), amblyopia and/or strabismus patients (n = 72), and a historic cohort of amblyopes born between 1962-1972 and occluded between 1968-1974 (n = 173). The correlations among the responses to the 26 A&amp;SQ items were factor-analysed by Principal Component Analysis (PCA). As the development of the A&amp;SQ was intuitive-deductive, it was expected that the pattern of correlation could be explained by the five a priori hypothesized dimensions: fear of losing the better eye, distance estimation, visual disorientation, diplopia, and social contact and cosmetic problems. Distribution of questions along the factors derived by PCA was examined by orthogonal Varimax rotation. Results: Data from 296 respondents were analyzed. PCA provided that six factors (cutoff point eigenvalue &gt;1.0) accumulatively explained 70.5% of the variance. All A&amp;SQ dimensions but one matched with four factors found by Varimax rotation (factor loadings &gt;0.50), while two factors pertained to the fifth dimension. The six factors explained 33.7% (social contact and cosmetic problems); 10.3% (near distance estimation); 8.7% (diplopia); 7.2% (visual disorientation); 6.3% (fear of losing the better eye); and 4.3% (far distance estimation), together 70.48% of the item variance. Conclusion: The highly explained variance in the A&amp;SQ scores by the factors found by the PCA confirmed the a priori hypothesized dimensions of this QoL instrument.</description>
    </item> <item>
      <title>Behavioral treatments of chronic tension-type headache in adults: Are they beneficial? (Article)</title>
      <link>http://repub.eur.nl/res/pub/16290/</link>
      <pubDate>2009-06-01T00:00:00Z</pubDate>
      <description>To assess the efficacy of behavioral treatments in patients with tension headache. Medline, Cinahl, EMBASE, and the Cochrane library were searched from inception to October 2007 and reference lists were checked. We selected randomized trials evaluating behavioral treatments (e.g., relaxation, electromyographic EMG biofeedback, and cognitive behavioral training) in patients with tension-type headache (TTH). We assessed the risk of bias using the Delphi list and extracted data from the original reports. A qualitative analysis was carried out. We found 44 trials (2618 patients), which were included in this review, of which only 5 studies (11.4%) were considered to have low risk of bias. Most trials lacked adequate power to show statistical significant differences, but frequently, recovery/improvement rates did not reach clinical relevance. In 8 studies, relaxation treatment was compared with waiting list conditions, and in 11 studies, biofeedback was compared with waiting list conditions, both showing inconsistent results. On the basis of the available literature, we found no indications that relaxation, EMG biofeedback, or cognitive behavioral treatment is better than no treatment, waiting list, or placebo controls.</description>
    </item> <item>
      <title>Large-scale screening and subsequent effects of migraine treatment on the work floor in the Netherlands (Article)</title>
      <link>http://repub.eur.nl/res/pub/16318/</link>
      <pubDate>2009-06-01T00:00:00Z</pubDate>
      <description>In a large retail business group the ID Migraine Screening Test was sent to employees with three or more absences from work in the past year (n = 2893). Employees with positive results were invited for a neurological consultation and migraine patients were randomly assigned to: first attack 'treated as usual' and the second attack treated with 40 mg eletriptan, or reversed order. Of the 2893 employees, 799 responded (28%), 260 were positively screened for migraine (33%), 84 patients were diagnosed by a neurologist and 41 of the 75 included patients completed the protocol. Eletriptan induced pain-free response in 33.3% of the patients at 4 h compared with 0% after 'non-specific' treatment (P = 0.03). Eletriptan also significantly improved quality of life, but differences in absence from work and productivity loss could not be detected. In conclusion, in-company screening can be beneficial for undertreated employees, but implementation obstacles can reduce the effectiveness of screening.</description>
    </item> <item>
      <title>Long-term effects on cancer survivors' quality of life of physical training versus physical training combined with cognitive-behavioral therapy: Results from a randomized trial (Article)</title>
      <link>http://repub.eur.nl/res/pub/24190/</link>
      <pubDate>2009-06-01T00:00:00Z</pubDate>
      <description>Background: We compared the effect of a 12-week group-based multidisciplinary self-management rehabilitation program, combining physical training (twice weekly) and cognitive-behavioral therapy (once weekly) with the effect of 12-week group-based physical training (twice weekly) on cancer survivors' quality of life over a 1-year period. Materials and methods: One hundred forty-seven survivors [48.8 ± 10.9 years (mean ± SD), all cancer types, medical treatment ≥ 3 months ago] were randomly assigned to either physical training (PT, n = 71) or to physical training plus cognitive-behavioral therapy (PT + CBT, n = 76). Quality of life and physical activity levels were measured before and immediately after the intervention and at 3- and 9-month post-intervention using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30 questionnaire and the Physical Activity Scale for the Elderly, respectively. Results: Multilevel linear mixed-effects models revealed no differential pattern in change of quality of life and physical activity between PT and PT + CBT. In both PT and T + CBT, quality of life and physical activity were significantly and clinically relevantly improved immediately following the intervention and also at 3- and 9-month post-intervention compared to pre-intervention (p &lt; 0.001). Conclusion: Self-management physical training had substantial and durable positive effects on cancer survivors' quality of life. Participants maintained physical activity levels once the program was completed. Combining physical training with our cognitive-behavioral intervention did not add to these beneficial effects of physical training neither in the short-term nor in the long-term. Physical training should be implemented within the framework of standard care for cancer survivors.</description>
    </item> <item>
      <title>Quality of life in children with primary headache in a general hospital (Article)</title>
      <link>http://repub.eur.nl/res/pub/25225/</link>
      <pubDate>2009-06-01T00:00:00Z</pubDate>
      <description>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. </description>
    </item> <item>
      <title>A prospective study on coping strategies and quality of life in patients after stroke, assessing prognostic relationships and estimates of cost-effectiveness (Article)</title>
      <link>http://repub.eur.nl/res/pub/25428/</link>
      <pubDate>2009-03-01T00:00:00Z</pubDate>
      <description>Objective: To examine the prognostic value of coping strategies of patients after stroke at time of discharge on quality of life approximately one year later. In addition, we estimated the maximum cost of improving quality of life by enhancing coping strategies using strict assumptions. Methods: Eighty patients with a stroke completed several questionnaires, at discharge to home and 9-12 months later (follow-up). Questionnaires measured quality of life, coping strategies Tenacious Goal Pursuit and Flexible Goal Adjustment. First, a regression analysis was carried out predicting quality of life at follow-up from coping strategies at discharge. Secondly, a maximum in terms of acceptable cost was calculated for several possible effect sizes. Results: Both coping strategies at discharge were positively associated with quality of life at follow-up. With regards to cost-effectiveness, a medium effect size would result in an increase in quality of life of approximately 10%. The maximum acceptable cost of an intervention for a single patient is therefore set at €2500, assuming a benefit of one year and a cost per quality adjusted life year of €25,000. Conclusion: Coping strategies at discharge are predictive of quality of life one year later. The costs of improving quality of life are thought to be within the limits that determine a cost-effective intervention. </description>
    </item> <item>
      <title>Strategies to advance living kidney donation: a single center's experience. (Article)</title>
      <link>http://repub.eur.nl/res/pub/16545/</link>
      <pubDate>2009-01-01T00:00:00Z</pubDate>
      <description>In Europe, living kidney donation rates differ considerably from country to country. These differences are related to deceased kidney donation rates: countries with higher deceased donation rates have lower living donation rates. Despite the differences, all countries have one thing in common, namely, the shortage of kidneys for transplantation. Living kidney donation is a good option to alleviate these shortages. In our center, 60% to 70% of all kidney transplants come from living donors. This article describes various strategies that may have contributed to these high living donation rates: team attitude, educational materials and meetings, and alternative donation programs (exchange donation, domino-paired donation, Good Samaritan donation). Also described are some less conventional strategies for increasing rate of living kidney donation that are not used in the Netherlands but may offer some good perspectives (e.g., the "Norwegian approach" and home-based educational programs).</description>
    </item> <item>
      <title>Avoiding the issue: Patients' (non)communication with potential living kidney donors (Article)</title>
      <link>http://repub.eur.nl/res/pub/25055/</link>
      <pubDate>2009-01-01T00:00:00Z</pubDate>
      <description>Objective: Kidney transplantation with a living donor has proved to be an effective solution for kidney patients on the waiting list for transplantation. Nevertheless, it may be difficult to find a living kidney donor. The purpose of this explorative study is to investigate how kidney transplant candidates may, or may not, find a living donor in the Netherlands. Methods: We compared a group of 42 patients who did not find a living donor with a group of 42 patients who did, using semi-structured interviews. Results: We found that, although almost all patients recognized the advantages of living kidney donation and were willing to accept the offer of a living kidney donor, many found it very difficult to ask a potential donor directly. This was true for both groups. Conclusion: Patients may gain from professional support to deal with this situation in ways that balance their medical needs and their personal relationships. Practice Implications: Support programs should be developed to assist patients in developing strategies for discussing living kidney donation with potential donors. </description>
    </item> <item>
      <title>Lay trainers with migraine for a home-based behavioral training: A 6-month follow-up study: Research submission (Article)</title>
      <link>http://repub.eur.nl/res/pub/14618/</link>
      <pubDate>2008-10-01T00:00:00Z</pubDate>
      <description></description>
    </item> <item>
      <title>Impact of motor vehicle accidents on neck pain and disability in general practice (Article)</title>
      <link>http://repub.eur.nl/res/pub/15214/</link>
      <pubDate>2008-09-01T00:00:00Z</pubDate>
      <description>Background: High levels of continuous neck pain after a motor vehicle accident (MVA) are reported in cross-sectional studies. Knowledge of this association in general practice is limited. Aim: To compare the differences in perceived pain and disability in patients with acute neck pain due to an MVA versus other self-reported causes. The secondary aim was to identify prognostic factors for continuous neck pain. Design of study: Prospective cohort study with 1-year follow-up. Setting: General practices in Rotterdam and its suburban region. Method: Patients with non-specific acute neck pain were invited to participate. Questionnaires were collected at baseline and after 6,12, 26, and 52 weeks. The numerical pain-rating scale (NRS) and the neck disability index (NDI) were measured. Regression analysis was used to identify prognostic factors for continuous neck pain. Results: A total of 187 patients were included. The MVA subgroup (n = 42) was significantly younger (P = 0.007), reported more sick leave (P = 0.037), higher levels of headache (P&lt;0.001) and higher NDI scores at baseline (P = 0.018) but lower scores for previous neck pain (P = 0.015) compared to the remaining cohort. At follow-up the MVA subgroup had higher scores for continuous neck pain (63% versus 40%) and at the NDI (11.0 versus 7.1). After multivariate analysis 'pain in the upper part of the neck' (odds ratio [OR] = 1.6), 'duration of complaints at baseline longer than 2 weeks' (OR = 5.3), and an 'MVA' (OR = 5.3) were significantly correlated with outcome. Conclusion: Individuals exposed to MVAs constitute a relevant subgroup of patients with neck pain. An MVA and a longer duration of complaints are prognostic factors for continuous neck pain.</description>
    </item> <item>
      <title>Prognosis of chronic or recurrent abdominal pain in children (Article)</title>
      <link>http://repub.eur.nl/res/pub/29493/</link>
      <pubDate>2008-09-01T00:00:00Z</pubDate>
      <description>Background: Chronic abdominal pain (CAP) or recurrent abdominal pain is common in childhood and is rarely associated with organic disease. With modern diagnostic technology, new organic abnormalities are found in children with CAP. Thus far a causal relation between these abnormalities and CAP has not been established. The additional prognostic value of extensive testing of children with CAP is a subject of debate. Objectives: To investigate how often abdominal pain persists in children with CAP and to investigate whether medical tests such as laboratory tests, imaging, and endoscopy have additional prognostic value to history taking and clinical examination. Materials and Methods: A systematic search was conducted in MEDLINE, EMBASE, and PsycINFO for prospective cohort studies published from 1960 until October 2005. The most common medical key words for CAP were used in our search strategy. The methodological quality of studies was determined. Clinical heterogeneity between studies was analyzed. The percentages of children with abdominal pain after follow-up were pooled. Results: The search yielded 2620 citations, of which 18 studies met the inclusion criteria. In total, 1331 children were followed up for 5 years (median, range 1-29 years). In total, 29.1% (95% CI 28.1-30.2) of patients with CAP had abdominal pain after follow-up. The prognosis of CAP diagnosed clinically was similar to that diagnosed after additional medical testing. Conclusions: CAP persisted in 29.1% (95% CI 28.1-30.2) of children. In the absence of alarming symptoms, additional diagnostic testing did not influence the prognosis of CAP. </description>
    </item> <item>
      <title>Paediatric palliative care (Article)</title>
      <link>http://repub.eur.nl/res/pub/29431/</link>
      <pubDate>2008-07-01T00:00:00Z</pubDate>
      <description></description>
    </item> <item>
      <title>Clinical course and prognostic factors in acute neck pain: An inception cohort study in general practice (Article)</title>
      <link>http://repub.eur.nl/res/pub/30477/</link>
      <pubDate>2008-07-01T00:00:00Z</pubDate>
      <description>Objective. To describe the natural course of patients with acute neck pain presenting in general practice and to identify prognostic factors for recovery and sick leave. Design. We conducted a prospective cohort study with a 1-year follow-up in general practice. Questionnaires were collected at baseline and after 6, 12, 26, and 52 weeks. Days of sick leave were dichotomized into two groups: below and above 7 days of sick leave. Logistic regression was used to identify prognostic factors for recovery and sick leave. Patients. Consecutive patients with nonspecific neck pain lasting no longer than 6 weeks were invited to participate. Results. One hundred eighty-seven patients were included and 138 (74%) provided follow-up data. After 1 year, 76% of the patients stated to be fully recovered or much improved, although 47% reported to have ongoing neck pain. Almost half of the patients on sick leave at baseline returned to work within 7 days. Multivariate analysis showed that the highest association with recovery was the advice of the general practitioner (GP) "to wait and see" (odds ratio [OR]6.7, 95% confidence interval [CI]1.6 - 31.8). For sick leave, referral by the GP, for physical therapy or to a medical specialist, showed the highest association (OR 2.8, 95% CI 1.0 - 8.4). Conclusion. Acute neck pain hada good prognosis for the majority of patients, but still a relatively high proportion of patients reported neck pain after 1-year follow-up. The advice given by the GP "to wait and see"was associated with recovery, and "referral" was associated with prolonged sick leave. </description>
    </item> <item>
      <title>Public survey of financial incentives for kidney donation (Article)</title>
      <link>http://repub.eur.nl/res/pub/29969/</link>
      <pubDate>2008-03-01T00:00:00Z</pubDate>
      <description>Background. One of the most fiercely debated strategies to increase the number of kidneys for transplantation is the introduction of financial incentives. As the success of such strategy largely depends on public support, we performed a public survey on this topic. Methods. We developed a questionnaire on financial incentives for living kidney donation. We investigated the public opinion on two different fixed compensations: either life-long health insurance compensation or €25 000. Furthermore, we investigated public preferences on the practical implementation: either the patient seeks a donor or the donor registers for donation at an independent institute. For all examples, health insurance companies would cover costs of treatment. TNS NIPO, a professional organization for market research, sent the survey to a response panel that is made representative for the general population. Results. Five hundred fifty respondents (M/F: 60/40; median age: 46) filled out the questionnaire. Forty-six percent considered the situation wherein health insurance companies would introduce financial incentives to increase the number of living kidney donors undesirable (26% undesirable; 20% very undesirable), compared to 25% who perceived this as desirable (20% desirable; 5% very desirable). The option wherein the donor registers at an independent institute to donate to a patient on the list and in turn receives life-long health insurance compensation was chosen as most favourable. Of all respondents, 5.5% stated that there was a (very) great chance that they would donate a kidney in order to get compensation if such system were to be reality. Conclusion. Although almost half of the respondents (46%) were reluctant towards introducing a system with fixed compensation to increase the number of living kidney donors, still 25% of the general public reacted positively. </description>
    </item> <item>
      <title>The psychological evaluation of Samaritan kidney donors: A systematic review (Article)</title>
      <link>http://repub.eur.nl/res/pub/32413/</link>
      <pubDate>2008-02-01T00:00:00Z</pubDate>
      <description>Background. Living kidney donation to a loved one has become common practice. Another type of living donation that is becoming more acceptable to the transplant community is 'Samaritan donation'. Samaritan kidney donors are willing to donate to patients they do not know. Until recently there has been great reluctance to accept the offers of Samaritan donors because it was feared that these donors might be mentally unstable. Method. The purpose of this article is to review the literature about the psychological evaluation of potential Samaritan kidney donors for donor suitability. We have performed a systematic literature search in Pubmed, ISI Web of Science and PsycINFO. We compare and discuss how each study approaches the question about Samaritan donor selection. In addition, we have also screened the studies for reports of rejections of Samaritan donors on psychological grounds. Results. We have found five articles that at least in some detail describe the evaluation of potential Samaritan donors. For all five articles found, a consultation with either a psychiatrist or a psychologist formed a standard part of the donor evaluation procedure. This evaluation consisted of an interview, and in most instances, additional psychometric testing. According to the articles found, the two major criteria for donor rejection were psychopathology/psychological instability and motivational issues. Three studies reported on the rejection of potential donors on psychological grounds. Conclusions. The evaluation of Samaritan kidney donors is a developing field in clinical medicine. Given the relatively low incidence of these types of donations, we recommend the exchange of experience between centres that run a Samaritan donor programme, in order to improve donor evaluation criteria. </description>
    </item> <item>
      <title>Low negative affect prior to treatment is associated with a decreased chance of live birth from a first IVF cycle (Article)</title>
      <link>http://repub.eur.nl/res/pub/29504/</link>
      <pubDate>2008-01-01T00:00:00Z</pubDate>
      <description>BACKGROUND: Psychological variables, such as anxiety and depression, may have a negative impact on IVF outcomes, but the evidence remains inconclusive. Previous studies have usually measured a single psychological parameter with clinical pregnancy as the outcome. The objective of the current study was to determine whether pretreatment or procedural psychological variables in women undergoing a first IVF cycle affect the chance of achieving a live birth from that cycle. METHODS: Between February 2002 and February 2004, 391 women with an indication for IVF were recruited at two University Medical Centres in The Netherlands. Pretreatment anxiety and depression were measured with the Hospital Anxiety and Depression Scale. The Daily Record Keeping Chart was used to measure negative and positive affect before treatment and daily during ovarian stimulation. Multiple stepwise forward logistic regression analysis was performed with term live birth as the dependent variable. RESULTS: Regression analysis showed that women who expressed less negative affect at baseline were less likely to achieve live birth (P = 0.03). After one IVF cycle, women who received a standard IVF strategy were more likely to reach live birth delivery than those who received a mild IVF strategy (P = 0.002). A male/female indication for IVF was associated with a higher chance of achieving term live birth than a female only indication (P = 0.03). Age, duration of infertility or type of infertility were not independent predictors of live birth. CONCLUSIONS: The relationship between psychological parameters and IVF success rates is more complex than commonly believed. The expression of negative emotions before starting IVF might not be always detrimental for outcomes. </description>
    </item> <item>
      <title>Psychological barriers for living kidney donation: How to inform the potential donors? (Article)</title>
      <link>http://repub.eur.nl/res/pub/35187/</link>
      <pubDate>2007-10-01T00:00:00Z</pubDate>
      <description>BACKGROUND. This is the first large-scale interview study carried out in patients and potential donors who seem unwilling or unable to pursue living kidney donation. By investigating these groups, we explored whether further expansion of the living kidney donation program is feasible. METHODS. We interviewed 91 patients on the waiting list for a kidney transplant who did not pursue living kidney donation and their potential donors (n=53). We also included a comparison group. All respondents underwent an in-depth interview by a psychologist about topics that could influence their willingness to pursue living kidney donation. RESULTS. A total of 78% of the patients on the waiting list were willing to accept the offer of a living donor. The main reason for not pursuing living kidney donation was reluctance to discuss the issue with the potential donors. This was also found in the comparison group. Both groups indicated that if there was no donor offer, they tended to interpret this as a refusal to donate. This interpretation not always holds: more than one third (19 of 53) of the potential donors were open to consider themselves as a potential donor. On the other hand, a comparably sized group of potential donors (21 of 53) was reluctant about donation. The main reason for donor reluctance was fear for their health after donation. CONCLUSION. The majority of patients on the waiting list are willing to accept a living kidney donor, but adopt an awaiting attitude towards their potential donors. Offering those patients professional assistance should be considered. </description>
    </item> <item>
      <title>The psychological impact of IVF failure after two or more cycles of IVF with a mild versus standard treatment strategy (Article)</title>
      <link>http://repub.eur.nl/res/pub/35914/</link>
      <pubDate>2007-09-01T00:00:00Z</pubDate>
      <description>Background: Failure of IVF treatment after a number of cycles can be devastating for couples. Although mild IVF strategies reduce the psychological burden of treatment, failure may cause feelings of regret that a more aggressive approach, including the transfer of two embryos, was not employed. In this study, the impact of treatment failure after two or more cycles on stress was studied, following treatment with a mild versus a standard treatment strategy. Methods: Randomized controlled two-centre trial (ISRCTN35766970). Women were randomized to undergo mild ovarian stimulation (including GnRH antagonist co-treatment) and single embryo transfer (n = 197) or standard GnRH agonist long-protocol ovarian stimulation with double embryo transfer (n = 194). Participants completed the Hospital Anxiety and Depression Scale prior to commencing treatment and 1 week after the outcome of their final treatment cycle was known. Data from women who underwent two or more IVF cycles were subject to analysis (n = 253). Results: Women who experienced treatment failure after standard IVF treatment presented more symptoms of depression 1 week after treatment termination compared with women who had undergone mild IVF: adjusted mean (±95% confidence interval) = 10.2 (±2.3) versus 5.4 (±1.8), respectively, P = 0.01. Conclusions: Failure of IVF treatment after a mild treatment strategy may result in fewer short-term symptoms of depression as compared to failure after a standard treatment strategy. These findings may further encourage the application of mild IVF treatment strategies in clinical practice. </description>
    </item> <item>
      <title>The implementation of a kidney exchange program does not induce a need for additional psychosocial support (Article)</title>
      <link>http://repub.eur.nl/res/pub/36473/</link>
      <pubDate>2007-05-01T00:00:00Z</pubDate>
      <description>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. </description>
    </item> <item>
      <title>Coping strategies as determinants of quality of life in stroke patients: A longitudinal study (Article)</title>
      <link>http://repub.eur.nl/res/pub/36662/</link>
      <pubDate>2007-05-01T00:00:00Z</pubDate>
      <description>Background: Quality of life (QoL) is reduced for stroke patients and coping strategies have been suggested as determinants of QoL. Thus far the relationship between coping and QoL has only been examined in small-scale cross-sectional designs. Therefore, the current study set out to examine this relationship in a longitudinal setting. Methods: Stroke patients who were discharged home were interviewed at 4 different time points; just before discharge (T1), and 2 months (T2), 5 months (T3) and 9-12 months after discharge (T4). QoL was measured by the EQ-5D index score and the SF-36 utility score and coping expressed in terms of tenacious goal pursuit and flexible goal adjustment. Modified Rankin scale was assessed as a measure of general functioning. Results: Eighty stroke patients were included. Coping was not predictive of QoL at T1 and T2 but rather at T3 and T4. At T4 both coping strategies determined the levels of QoL as measured with the EQ-5D index score; higher levels of tenacious goal pursuit as well as flexible goal adjustment were associated with higher levels of QoL. This regression model explained 44% of the variance. Conclusions: Coping is a powerful determinant of QoL, but only more than 5 months after discharge; before this time QoL is mainly determined by general functioning. Both coping strategies were important determinants of QoL. Copyright </description>
    </item> <item>
      <title>Multidimensional fatigue and its correlates in hospitalised advanced cancer patients (Article)</title>
      <link>http://repub.eur.nl/res/pub/36481/</link>
      <pubDate>2007-04-01T00:00:00Z</pubDate>
      <description>Although fatigue is a multidimensional concept, multidimensional fatigue is rarely investigated in hospitalised cancer patients. We determined the levels and correlates of multidimensional fatigue in 100 advanced cancer patients admitted for symptom control. Fatigue dimensions were general fatigue (GF), physical fatigue (PF), reduced activity (RA), reduced motivation (RM) and mental fatigue (MF). Investigated correlates were tumour load, prior anti-tumour treatment, medication use, haemoglobin levels, serum biochemical variables, physical symptoms and mood. Median GF, PF and RA scores were very high; median RM and MF scores were moderate, and differed from the GF, PF and RA scores. Multiple regression analyses showed that symptoms and mood correlated with all fatigue dimensions. Each fatigue dimension had different relationships with other factors. Hospitalised advanced cancer patients differ in fatigue levels depending on the fatigue dimension, and each fatigue dimension has different correlates. The results confirm that fatigue should be regarded as a multidimensional concept. </description>
    </item> <item>
      <title>Generic and disease-specific health related quality of life of liver patients with various aetiologies: A survey (Article)</title>
      <link>http://repub.eur.nl/res/pub/36484/</link>
      <pubDate>2007-04-01T00:00:00Z</pubDate>
      <description>Most studies on health related quality of life (HRQoL) of chronic liver patients were done in small clinical populations or restricted to one aetiology or disease stage. There is still a need for a study in a large liver patient population with various aetiologies and disease stages, approaching a population-based study. We evaluated the impact of liver disease aetiology on generic HRQoL, disease-specific HRQoL and fatigue and we compared HRQoL and fatigue between aetiological groups and healthy Dutch controls. Members of the Dutch liver patient association completed the Liver Disease Symptom Index, Short Form-36, and Multidimensional Fatigue Index-20. We compared the HRQoL between patients with viral hepatitis, autoimmune hepatitis, cholestatic diseases, hemochromatosis and other liver diseases by linear, ordinal and logistic regression, corrected for disease stage and other significant factors. Viral hepatitis patients showed a worse mental health than other aetiological groups. Hemochromatosis patients demonstrated 17% more bodily pain than viral hepatitis patients and the strongest decrease in role emotional health with increasing age. Aetiological groups showed a worse generic HRQoL and more fatigue than controls. In conclusion, viral hepatitis and hemochromatosis patients have a more impaired HRQoL than patients of other liver disease aetiological groups. </description>
    </item> <item>
      <title>A mild treatment strategy for in-vitro fertilisation: a randomised non-inferiority trial (Article)</title>
      <link>http://repub.eur.nl/res/pub/35834/</link>
      <pubDate>2007-03-03T00:00:00Z</pubDate>
      <description>Background: Mild in-vitro fertilisation (IVF) treatment might lessen both patients' discomfort and multiple births, with their associated risks. We aimed to test the hypothesis that mild IVF treatment can achieve the same chance of a pregnancy resulting in term livebirth within 1 year compared with standard treatment, and can also reduce patients' discomfort, multiple pregnancies, and costs. Methods: We did a randomised, non-inferiority effectiveness trial. 404 patients were randomly assigned to undergo either mild treatment (mild ovarian stimulation with gonadotropin-releasing hormone [GnRH] antagonist co-treatment combined with single embryo transfer) or a standard treatment (stimulation with a GnRH agonist long-protocol and transfer of two embryos). Primary endpoints were proportion of cumulative pregnancies leading to term livebirth within 1 year after randomisation (with a non-inferiority threshold of -12·5%), total costs per couple up to 6 weeks after expected date of delivery, and overall discomfort for patients. Analysis was by intention to treat. This trial is registered as an International Standard Randomised Clinical Trial, number ISRCTN35766970. Findings: The proportions of cumulative pregnancies that resulted in term livebirth after 1 year were 43·4% with mild treatment and 44·7% with standard treatment (absolute number of patients=86 for both groups). The lower limit of the one-sided 95% CI was -9·8%. The proportion of couples with multiple pregnancy outcomes was 0·5% with mild IVF treatment versus 13·1% (p&lt;0·0001) with standard treatment, and mean total costs were €8333 and €10745, respectively (difference €2412, 95% CI 703-4131). There were no significant differences between the groups in the anxiety, depression, physical discomfort, or sleep quality of the mother. Interpretation: Over 1 year of treatment, cumulative rates of term livebirths and patients' discomfort are much the same for mild ovarian stimulation with single embryos transferred and for standard stimulation with two embryos transferred. However, a mild IVF treatment protocol can substantially reduce multiple pregnancy rates and overall costs. </description>
    </item> <item>
      <title>Living Kidney Donation: Psychological and Ethical Aspects (Internal Report)</title>
      <link>http://repub.eur.nl/res/pub/9606/</link>
      <pubDate>2006-08-01T00:00:00Z</pubDate>
      <description>DOELSTELLING

Nierdonatie bij leven levert medisch en maatschappelijk gezien veel voordelen op, maar toch willen of kunnen niet alle nierpatiënten op de wachtlijst en/of hun naasten zich opgeven voor het nierdonatie bij leven programma. De doelstelling van het project ‘Nierdonatie bij leven: psychologische en ethische aspecten’ is het verkrijgen van meer inzicht in de kennis en acceptatie van nierdonatie bij leven. Het gaat hierbij om kennis en acceptatie onder proefpersonen die daadwerkelijk in aanmerking komen voor nierdonatie/ transplantatie bij leven, dat wil zeggen (1) patiënten met eindfase nierfalen op de wachtlijst voor een niertransplantatie en (2) de mensen uit hun omgeving; de potentiële donoren. Het benaderen van deze groepen is de strategie om uit te vinden of, en onder welke voorwaarden, uitbreiding van het nierdonatie bij leven programma praktisch haalbaar en ethisch verdedigbaar is. 

VRAAGSTELLINGEN

Het project omvat twee vraagstellingen. De eerste vraagstelling is: wat zijn de psychologische barrières voor nierdonatie bij leven voor patiënten op de wachtlijst, en de mensen uit hun omgeving? De tweede vraagstelling luidt: wat zijn de morele argumenten om de patiënt en de mensen uit de omgeving van de patiënt (de potentiële donoren) al dan niet actief te benaderen over nierdonatie bij leven? In andere woorden; in hoeverre zijn interventies ethisch verdedigbaar?

OPZET

PATIËNTEN EN (POTENTIËLE) DONOREN

Wij hebben allereerst de groep patiënten die op de wachtlijst voor niertransplantatie staat benaderd (regio Erasmus MC). Aan de patiënt vragen wij toestemming om ook de potentiële donoren uit zijn of haar omgeving te benaderen. Indien beiden hiermee instemmen, vindt het interview met deze potentiële donor plaats. Voor deze studie hebben we tevens een controlegroep benaderd. In de controlegroep zitten patiënten en donoren die nog geen familietransplantatie hebben ondergaan, maar die wel al hebben besloten door te gaan met de donatie bij leven procedure en dit met hun artsen hebben overlegd. 

INTERVIEW

Alle deelnemers aan ons onderzoek zijn geïnterviewd middels een semi-gestructureerd interview. Voorafgaand onderzoek heeft aangetoond dat een aantal factoren een rol kan spelen bij het niet kunnen of willen ondergaan van nierdonatie bij leven. Deze factoren komen terug in de interviews:
·	Demografische en medische variabelen 
·	Kennis en informatie
·	Standpunten en argumenten ten aanzien van nierdonatie bij leven,
·	Communicatie met de arts en de omgeving 
·	Risicoperceptie
·	Verwachtingen ten aanzien van de gevolgen voor de persoonlijke relatie tussen donor en ontvanger.

ETHISCHE ANALYSE

De resultaten van de empirische gedeelte van deze studie dienen als basis voor de ethische analyse. Argumenten zoals gevonden in het empirische gedeelte van de studie worden getoetst op houdbaarheid met behulp van ethische theorieën over de structuur van argumenten.,Wij hebben met name gebruik gemaakt van de theorien zoals die geformuleerd zijn door Toulmin, Rawls en Nagel. 

BEREIKTE RESULTATEN/NIEUWE INZICHTEN

De bereidheid om een nier van iemand in de naaste omgeving te accepteren is zeer hoog voor de patiënten in de onderzoeksgroep: slecht 19% is negatief over donatie bij leven. Het is dus niet zo dat de patiënt in het algemeen niet zou willen. Voor een aantal variabelen vonden we verschillen tussen de onderzoeksgroep en de controlegroep. Een opvallende uitkomst is dat in vrijwel àlle gevallen in de controle groep de communicatie over de donatie gestart wordt vanuit de donor: het al dan niet aangeboden krijgen van een nier lijkt bepalend voor het doorgaan van de (levende donor) transplantatie. Patiënten vinden het erg moeilijk om uit zichzelf over het onderwerp te beginnen. Ethische analyse laat zien dat de argumenten en bezwaren tegen nierdonatie bij leven zoals gevonden in de onderzoeksgroep weerlegbaar zijn. Dit gegeven draagt bij aan de rechtvaardiging van interventies in de situatie van patiënten op de wachtlijst voor transplantatie die zich in eerste instantie niet aanmelden voor het nierdonatie bij leven programma.</description>
    </item> <item>
      <title>De Behoefte aan Psychosociale Steun bij Deelnemers aan het Nederlandse Cross-over Transplantatie Programma (Research Paper)</title>
      <link>http://repub.eur.nl/res/pub/7769/</link>
      <pubDate>2006-06-01T00:00:00Z</pubDate>
      <description>Final technical report of the project.</description>
    </item> <item>
      <title>Symptomatic treatment of migraine in children: a systematic review of medication trials. (Article)</title>
      <link>http://repub.eur.nl/res/pub/13875/</link>
      <pubDate>2005-12-01T00:00:00Z</pubDate>
      <description>OBJECTIVE: Treatment of pediatric migraine includes an individually tailored regimen of both nonpharmacologic and pharmacologic measures. The mainstay of symptomatic treatment in children with migraine is intermittent oral or suppository analgesics, but there is no coherent body of evidence on symptomatic treatment of childhood migraine available. The objective of this review is to describe and assess the evidence from randomized and clinical controlled trials concerning the efficacy and tolerability of symptomatic treatment of migraine in children. DESIGN: Systematic review according to the standards of the Cochrane Collaboration. METHODS: Databases were searched from inception to June 2004. Additional reference checking was performed. Two authors independently selected randomized and controlled trials evaluating the effects of symptomatic treatment in children (&lt;18 years old) with migraine, using headache (HA) clinical improvement as an outcome measure. Two authors assessed trial quality independently by using the Delphi list, and data were extracted from the original reports by using standardized forms. Quantitative and qualitative analysis was conducted according to type of intervention. RESULTS: A total of 10 trials were included in this review, of which 6 studies were considered to be of high quality. The number of included participants in each trial ranged from 14 to 653, with a total of 1575 patients included in this review. Mean dropout rate was 19.8% (range: 0-39.1%), and the mean age of participants was 11.7 +/- 2.2 years (range: 4-18 years). All studies used HA diaries to assess outcomes. In most studies, a measure of clinical improvement was calculated by using these diaries. Improvement often was regarded as being clinically relevant when the patients' HA declined by &gt; or =50%. Regarding oral analgesic treatment, the effectiveness of acetaminophen, ibuprofen, and nimesulide were evaluated. When compared with placebo, acetaminophen (relative risk [RR]: 1.5; 95% confidence interval [CI]: 1.0-2.1) and ibuprofen (pooled RR: 1.5; 95% CI: 1.2-1.9) significantly reduced HAs. We conclude that there is moderate evidence that both acetaminophen and ibuprofen are more effective in reduction of symptoms 1 and 2 hours after intake than placebo with minor adverse effects. No clear differences in effect were found between acetaminophen and ibuprofen or nimesulide. Regarding the nonanalgesic interventions, nasal-spray sumatriptan, oral sumatriptan, oral rizatriptan, oral dihydroergotamine, intravenous prochlorperazine, and ketorolac were evaluated. When compared with placebo, nasal-spray sumatriptan (pooled RR: 1.4; 95% CI: 1.2-1.7) seemed to significantly reduce HAs. We conclude that there is moderate evidence that nasal-spray sumatriptan is more effective in reduction of symptoms than placebo but with significantly more adverse events. No differences in effect were found between oral triptans and placebo. All medications were well tolerated, but significantly more adverse events were reported for nasal-spray sumatriptan compared with placebo. We also conclude that there is moderate evidence that intravenous prochlorperazine is more effective than intravenous ketorolac in the reduction of symptoms 1 hour after intake. No differences in effect were found between oral dihydroergotamine and placebo. CONCLUSIONS: Acetaminophen, ibuprofen, and nasal-spray sumatriptan are all effective symptomatic pharmacologic treatments for episodes of migraine in children. The new frontier for symptomatic treatment is likely to be the development of triptan agents for use in children. Most treatments have only been evaluated in 1 or 2 studies, which limits the generalizability of the findings. We strongly recommend performing a large, high-quality randomized, controlled trial evaluating different symptomatic medications compared with each other or to placebo treatment. Favorable high-quality studies should be performed and reported according to the CONSORT statement. Clinical improvement of HA should be used as the primary outcome measure, but quality of life, days missed at school, and satisfaction of child or parents should also be used as an outcome measure in future studies.</description>
    </item> <item>
      <title>Mens (dood of levend) of dier? Attitudes over en morele implicaties van orgaanverwerving (Research Paper)</title>
      <link>http://repub.eur.nl/res/pub/1431/</link>
      <pubDate>2004-08-02T00:00:00Z</pubDate>
      <description>Dit rapport is het verslag van een verkennende studie naar attitudes met betrekking tot orgaandonatie, en de morele implicaties hiervan. Psychologisch en ethisch onderzoek vullen elkaar in dit rapport aan. Er wordt aandacht geschonken aan twee ontwikkelingen op het gebied van orgaanverwerving: de toename van orgaandonaties bij leven, met name bij donatie van nieren en de verminderde interesse in de ontwikkeling van xenotransplantatie. Het psychologische deel van het rapport valt uiteen in literatuurstudie en eigen empirisch onderzoek. In dit deel wordt zowel de attitude van patiënten als de psychosociale belasting beschreven voor xenotransplantatie en voor nierdonatie bij leven. Patiënten zien nierdonatie bij leven in het algemeen als een wenselijk alternatief voor de wachtlijstsituatie, terwijl men in dit opzicht een stuk terughoudender is ten aanzien van xenotransplantatie. Om te bepalen welke rol van overheid, zorgverleners en onderzoekers gepast is, is het van belang te begrijpen hoe persoonlijke overtuigingen worden gevormd en kunnen veranderen. In het ethische, tweede deel van het rapport wordt dan ook meer aandacht besteed aan de verschillende motivaties voor orgaandonatie. Bij postmortale donatie worden vooral waarden als vrijwilligheid, anonimiteit en altruïsme genoemd. Bij familiedonatie doen begrippen als vanzelfsprekende solidariteit, morele plicht en lotsverbondenheid hun intrede, maar ook begrippen als eigenbelang, afhankelijkheid en wederkerigheid. Onderzocht wordt hoe de verschillende donatievormen zich tot elkaar verhouden, teneinde te bepalen op welke motivaties voor orgaandonatie we als maatschappij een beroep willen doen. Op dit punt wordt expliciet ingegaan op de rol van de overheid. Tevens is er een meer losstaand hoofdstuk gewijd aan commerciële orgaandonatie.</description>
    </item> <item>
      <title>Generic and disease-specific health related quality of life in non-cirrhotic, cirrhotic and transplanted liver patients: a cross-sectional study. (Article)</title>
      <link>http://repub.eur.nl/res/pub/13262/</link>
      <pubDate>2003-11-17T00:00:00Z</pubDate>
      <description>BACKGROUND: Studies on Health Related Quality of Life (HRQoL) of chronic
      liver patients were performed in clinical populations. These studies
      included various disease stages but small variations in aetiology and no
      transplanted patients. We performed a large HRQoL study in non-cirrhotic,
      cirrhotic and transplanted liver patients with sufficient variety in
      aetiology. We compared the generic HRQoL and fatigue between liver
      patients and healthy controls and compared the disease-specific and
      generic HRQoL and fatigue between non-cirrhotic, cirrhotic and
      transplanted liver patients, corrected for aetiology. METHODS: Members of
      the Dutch liver patient association received the Short Form-36, the Liver
      Disease Symptom Index and the Multidimensional Fatigue Index-20. Based on
      reported clinical characteristics we classified respondents (n = 1175) as
      non-cirrhotic, compensated cirrhotic, decompensated cirrhotic or
      transplants. We used linear, ordinal and logistic regression to compare
      the HRQoL between groups. RESULTS: All liver patients showed a
      significantly worse generic HRQoL and fatigue than healthy controls.
      Decompensated cirrhotic patients showed a significantly worse
      disease-specific and generic HRQoL and fatigue than non-cirrhotic
      patients, while HRQoL differences between non-cirrhotic and compensated
      cirrhotic patients were predominantly insignificant. Transplanted patients
      showed a better generic HRQoL, less fatigue and lower probabilities of
      severe symptoms than non-cirrhotic patients, but almost equal
      probabilities of symptom hindrance. CONCLUSIONS: HRQoL in chronic liver
      patients depends on disease stage and transplant history. Non-cirrhotic
      and compensated cirrhotic patients have a similar HRQoL. Decompensated
      patients show the worst HRQoL, while transplanted patients show a
      significantly better HRQoL than cirrhotic and non-cirrhotic patients.</description>
    </item> <item>
      <title>Major surgery within the first 3 months of life and subsequent biobehavioral pain responses to immunization at later age: a case comparison study (Article)</title>
      <link>http://repub.eur.nl/res/pub/10041/</link>
      <pubDate>2003-01-01T00:00:00Z</pubDate>
      <description>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.</description>
    </item> <item>
      <title>Child development and quality of parenting in lesbian families: no psychosocial indications for a-priori withholding of infertility treatment. A systematic review (Article)</title>
      <link>http://repub.eur.nl/res/pub/10036/</link>
      <pubDate>2002-01-01T00:00:00Z</pubDate>
      <description>Among fertility centres, much discussion focuses on whether to withhold
      infertility treatment from special patient groups (lesbians, prospective
      single parent(s), prospective parent(s) of relatively advanced age, or
      with severe diseases) because it is assumed that this is in the best
      interest of the child. The present study aimed to establish whether there
      is any empirical evidence for this assumption. A literature search was
      made in PubMed/Medline and PsycINFO to identify studies that had assessed
      psychological outcomes of children and quality of parenting after
      infertility treatment. Eight studies met the following inclusion criteria:
      published in an English-language peer-reviewed journal between 1978 and
      2002, and focused on psychosocial child development and quality of
      parenting after infertility treatment in the above-mentioned special
      patient groups. All reviewed studies focused on lesbian or single-parent
      families. Overall, the methodological quality of studies as assessed by a
      standardized set of criteria was high. The evidence of the studies
      (assessed by the best evidence synthesis method) was strong for the
      conclusion that in lesbian families the psychosocial development of
      children (median age 6.1 years) and the quality of parenting are not
      different from those in healthy heterosexual two-parent families after
      infertility treatment or natural conception. Therefore, withholding
      infertility treatment from lesbian families on the assumption that such
      intervention may not be in the interest of the prospective child seems
      unjustified. For the other special patient groups, no conclusions could be
      drawn, because of a lack of relevant studies.</description>
    </item> <item>
      <title>Comparison between children and adolescents with and without chronic benign pain: consultation rate and pain characteristics (Article)</title>
      <link>http://repub.eur.nl/res/pub/9907/</link>
      <pubDate>2002-01-01T00:00:00Z</pubDate>
      <description>The aim of the study was to determine whether children with chronic benign
      pain are in contact with their general practitioner (GP) more frequently
      than those without chronic benign pain. A random sample of children and
      adolescents aged between 0 and 18 years of age was drawn from the records
      of ten general practices. According to their responses to a pain
      questionnaire, subjects were assigned to the chronic benign pain group (n
          = 95) if they had pain of more than three months' duration, or to the
      control group (n = 105) if they had pain of less than three months'
      duration or no pain at all. All the subjects had an average GP
      consultation rate of 2.6 contacts per year. No significant age and sex
      differences were found. Chronic benign pain in childhood and adolescence
      is not related to increased use of healthcare services, suggesting that
      somatisation does not play a major role in children with chronic benign
      pain.</description>
    </item> <item>
      <title>Chronic pain and its impact on quality of life in adolescents and their families (Article)</title>
      <link>http://repub.eur.nl/res/pub/9619/</link>
      <pubDate>2001-01-01T00:00:00Z</pubDate>
      <description>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.</description>
    </item> <item>
      <title>Quantitative study of spontaneous eye blinks and eye tics in Gilles de la Tourette's syndrome (Article)</title>
      <link>http://repub.eur.nl/res/pub/9197/</link>
      <pubDate>1999-01-01T00:00:00Z</pubDate>
      <description>Spontaneous eye blink rate and frequency of eye tics were studied in nine
          Tourette patients during periods of rest, conversation, and video
          watching. In comparison with controls, the Tourette patients showed a
          significantly higher blink rate during rest and video watching.
          Conversation induced a significant increase in blink rate in the control
          group, but not in the Tourette patients, whereas video watching
          significantly increased blink rate in both groups. The frequency of eye
          tics showed a significant decrease during conversation and increased
          significantly during video watching in Tourette patients. In five
          patients, a significant positive correlation between blink rate and eye
          tic frequency was found, whereas one patient showed a significant negative
          correlation. Our results show that, even though some of our patients were
          on neuroleptic treatment, blink rate was about twofold to threefold
          increased versus healthy controls, suggesting increased central
          dopaminergic activity. Furthermore, these first quantitative data
          illustrate task specific effects on eye tic frequency and the complexity
          of their relation with eye blinks.</description>
    </item> <item>
      <title>Brief report: parental burden and grief one year after the birth of a child with a congenital anomaly (Article)</title>
      <link>http://repub.eur.nl/res/pub/9219/</link>
      <pubDate>1999-01-01T00:00:00Z</pubDate>
      <description>OBJECTIVE: To assess parental burden and grief one year after having a
          child with a congenital anomaly. METHOD: Twenty-five couples completed the
          Impact on Family Scale (IFS) and 22 couples answered the Perinatal Grief
          Scale (PGS). In addition, 27 mothers completed the Functional Health
          Status Scale (FSII-R). RESULTS: Mothers and fathers showed no significant
          differences in overall burden (IFS) and grief (PGS). Regarding the
          subscales, mothers reported significantly more personal strain.
          Foreknowledge from prenatal diagnosis about the anomaly, a low perceived
          functional health status of the child, and multiple congenital anomalies
          increased the burden and grief. CONCLUSIONS: A perinatal counseling team
          that provides clear and consistent information about the anomalies, the
          treatment, and the prognosis would help to reduce unnecessary stress and
          uncertainty, particularly for parents who received prenatal information
          and whose infant has multiple congenital anomalies.</description>
    </item>
  </channel>
</rss>