Busschbach, J.J. van

Systematic monitoring and treatment of physical symptoms to alleviate fatigue in patients with advanced cancer: A randomized controlled trial (Article)

2013-02-20T00:00:00Z

Purpose Several guidelines on the treatment of cancer-related fatigue recommend optimizing treatment of accompanying symptoms. However, evidence for this recommendation from randomized clinical trials is lacking. We investigated whether monitoring and protocolized treatment of physical symptoms alleviates fatigue. Patients and Methods In all, 152 fatigued patients with advanced cancer were randomly assigned to protocolized patient-tailored treatment (PPT) of symptoms or care as usual. The PPT group had four appointments with a nurse who assessed nine symptoms on a 0 to 10 numeric rating scale (NRS). Patients received a nonpharmacologic intervention for symptoms with a score ≥ 1 and a medical intervention for symptoms with a score ≥ 4. Fatigue dimensions, fatigue NRS score, interference of fatigue with daily life, symptom burden, quality of life, anxiety, and depression were measured at baseline and after 1, 2, and 3 months. Differences between the groups over time were assessed by using mixed modeling. Results Seventy-six patients were randomly assigned to each study arm. Mean age was 58 ± 10 years, 57% were female, and 65% were given palliative chemotherapy. We found significant improvements over time in favor of PPT for the primary outcome general fatigue (P = .01), with significant group differences at month 1 (effect size, 0.26; P = .007) and month 2 (effect size, 0.35; P = .005). Improvements in favor of PPT were also found for the following secondary outcomes: fatigue dimensions 'reduced activity' and 'reduced motivation,' fatigue NRS, symptom burden, interference of fatigue with daily life, and anxiety (all P ± .03). Conclusion In fatigued patients with advanced cancer, nurse-led monitoring and protocolized treatment of physical symptoms is effective in alleviating fatigue.

Factors associated with adherence to pharmaceutical treatment for rheumatoid arthritis patients: A systematic review (Article)

2013-01-25T00:00:00Z

Objectives: To identify factors associated with adherence to medication for rheumatoid arthritis or undifferentiated inflammatory arthritis using a systematic literature search. Methods: PubMed, PsycINFO, EMbase and CINAHL databases were systematically searched from inception to February 2011. Articles were included if they addressed medication adherence, used a reproducible definition, determinants and its statistical relationship. Methodological quality was assessed using a quality assessment list for observational studies derived from recommendations from Sanderson et al., (2007) [12]. Resulting factors were interpreted using the Health Belief Model (HBM). Results: 18 out of 1479 identified studies fulfilled the inclusion criteria. 64 factors were identified and grouped according to the HBM into demographic and psychosocial characteristics, cues to action and perceived benefits versus perceived barriers. The belief that the medication is necessary and DMARD use prior to the use of anti-TNF had strong evidence for a positive association with adherence. There is limited evidence for positive associations between adherence and race other than White, general cognition, satisfactory contact with the healthcare provider and the provision of adequate information from the healthcare provider. There is limited evidence for negative associations between adherence and having HMO insurance, weekly costs of TNF-I, having a busy lifestyle, receiving contradictory information or delivery of information in an insensitive manner by the rheumatologist. 18 factors were unrelated to adherence. Conclusions: The strongest relation with adherence is found to be prior use of DMARDs before using anti-TNF and beliefs about the necessity of the medication. Because the last one is modifiable, this provides hope to improve adherence.

An ELPAT definition of the concept ‘Psychosocial’ in the context of Screening Living Organ Donors in Europe: A Concept Mapping approach (Report)

2012-10-01T00:00:00Z

Abstract Introduction: Across Europe, transplant centers vary in the set of psychosocial screening criteria/guidelines used for the selection of eligible living donors. Our aim was to explore whether a common framework underlies this variation in screening criteria and, based on this framework, to develop a consensus on the essential elements of psychosocial screening of living liver and kidney donors. In order to do so, a research question was set out to define a conceptual framework of the concept ‘Psychosocial’ in the context of screening living organ donors in Europe. We formulated the following research question: Which psychosocial screening criteria are most commonly reported and considered as most important or effective in selecting eligible kidney and liver donors? Method: Concept mapping methodology was used to create a visual representation of the complex topic ‘Psychosocial’ in the context of screening living organ donors in Europe, in which underlying concepts, the relative importance of these concepts and the interplay between different concepts are organized. Initial psychosocial screening criteria (N=83) were derived from an extensive systematic literature review on guidelines, protocols and consensus statements on psychosocial screening practices, complemented by group brainstorm sessions. These criteria were then sorted and rated for their importance and effectiveness by 26 project participants. The data were analyzed using the Concept System Core© Software, which provided us with graphical depictions (concept maps) illustrating the view of project participants on these screening criteria. Pattern Matches and Go-Zones showed us the highlycommon, important and effective criteria. Results: The concept map procedure resulted in six clusters of psychosocial screening criteria: (1) Motivation and decision making (2) Personal resources (3) Psychopathology (4) Social resources (5) Ethical and Legal factors (6) Information and risk processing. Bivariate rating of these criteria revealed which important criteria are already frequently used for screening and which require more attention. Based on the cluster map and bivariate ratings we constructed a conceptual framework for non-medical risk factors that need to be considered when screening potential living organ donors. Conclusion: We provided a conceptual framework of psychosocial screening criteria which can serve as a practical recommendation for the psychosocial screening of potential living organ donors.

Psychological factors affecting the outcome of total hip and knee arthroplasty: A systematic review (Article)

2012-02-01T00:00:00Z

Objectives: Recently, numerous studies have reported that psychological factors can influence the outcome of total knee arthroplasty (TKA) and total hip arthroplasty (THA). However, a systematic overview is missing. The objective of this study was to examine which psychological factors influence the outcome of TKA and THA and to what extent. Methods: Data were obtained from the MEDLINE and EMBASE databases from inception to January 2011. Search terms included TKA and THA, outcome measures, and psychological aspects. Two reviewers independently selected the studies. Studies with a prospective before-after design with a minimum follow-up time of 6 weeks were included. One reviewer extracted the results and 2 reviewers independently conducted quality assessment. We distinguished between follow-up shorter and equal or longer than 1 year. Results: Thirty-five of 1837 studies met the inclusion criteria and were included in this systematic review. In follow-ups shorter than 1 year, and for knee patients only, strong evidence was found that patients with pain catastrophizing reported more pain postoperatively. Furthermore, strong evidence was found that preoperative depression had no influence on postoperative functioning. In long-term follow-up, 1 year after TKA, strong evidence was found that lower preoperative mental health (measures with the SF-12 or SF-36) was associated with lower scores on function and pain. For THA, only limited, conflicting, or no evidence was found. Conclusions: Low preoperative mental health and pain catastrophizing have an influence on outcome after TKA. With regard to the influence of other psychological factors and for hip patients, only limited, conflicting, or no evidence was found.

Impact of secondary cardiovascular events on health status (Article)

2012-01-01T00:00:00Z

Objectives: Estimates regarding the impact of secondary cardiovascular events on health status in patients treated for cardiovascular disease are scarce and of limited accuracy. Methods: We obtained individual patient data on health status (EuroQol five-dimensional questionnaire) and secondary cardiovascular events (death, myocardial infarction, cerebrovascular accidents, amputation, extracranial bleeding, and reinterventions) observed during 12 to 36 months of follow-up. Data originated from five completed clinical trials on revascularization in coronary heart disease (n = 2593) or peripheral arterial disease (PAD; n = 1379). We used linear mixed-effects modeling to estimate the acute impact of the initial secondary event and the health status before and after the event. Results: A total of 1595 patients had at least one secondary event. Loss of health status just before the event ranged from 0.36 utility score for amputation in women with PAD to zero for cerebrovascular accident in men with PAD. In patients with coronary heart disease, pre-event health status loss ranged from 0.34 for extracranial bleeding in women to 0.10 for myocardial infarction in women. The acute impact of secondary events ranged from minor deterioration for cerebrovascular accident (-0.03) to improvement after all other events, ranging from +0.01 for occlusion to +0.22 for amputation. Women had significantly lower pre-event scores than did men: -0.04 to -0.10 in coronary heart disease and -0.04 to -0.27 in PAD. Older patients had mostly large but insignificantly lower pre-event scores than did younger patients (range +0.04 to -0.67). Conclusions: Secondary events after revascularization in patients with cardiovascular disease are associated with health status loss before the event, while acute impact of the events was mostly small.

Framework for Modelling the Cost-effectiveness of Systemic Interventions Aimed to Reduce Youth Delinquency (Article)

2012-01-01T00:00:00Z

Background: Many interventions initiated within and financed from the health care sector are not necessarily primarily aimed at improving health. This poses important questions regarding the operationalisation of economic evaluations in such contexts. Aims of the Study: We investigated whether assessing costeffectiveness using state-of-the-art methods commonly applied in health care evaluations is feasible and meaningful when evaluating interventions aimed at reducing youth delinquency. Methods: A probabilistic Markov model was constructed to create a framework for the assessment of the cost-effectiveness of systemic interventions in delinquent youth. For illustrative purposes, Functional Family Therapy (FFT), a systemic intervention aimed at improving family functioning and, primarily, reducing delinquent activity in youths, was compared to Treatment as Usual (TAU). ‘‘Criminal activity free years’’ (CAFYs) were introduced as central outcome measure. Criminal activity may e.g. be based on police contacts or committed crimes. In absence of extensive data and for illustrative purposes the current study based criminal activity on available literature on recidivism. Furthermore, a literature search was performed to deduce the model’s structure and parameters.

Solution focused therapy: A promising new tool in the management of fatigue in Crohn's disease patients. Psychological interventions for the management of fatigue in Crohn's disease (Article)

2011-12-01T00:00:00Z

Background: Crohn's disease patients have a decreased Quality of Life (QoL) which is in part due to extreme fatigue. In a pilot study we prospectively assessed the feasibility and effect of psychological interventions in the management of fatigue. Methods: Patients with quiescent Crohn's disease and a high fatigue score according to the Checklist Individual Strength were randomized to Problem Solving Therapy (PST), Solution Focused Therapy (SFT) or to a control group (treatment as usual, TAU). Patients completed the Inflammatory Bowel Disease Questionnaire, the EuroQol-5D, and the Trimbos questionnaire for Costs. Results: Twenty-nine patients were included (12 TAU, 9 PST, 8 SFT), of these 72% were female, mean age was 31. years (range 20-50). The SFT group improved on the fatigue scale in 85.7% of the patients, in the PST group 60% showed improved fatigue scores and in the TAU group 45.5%.Although not significant, in both intervention groups the QoL increased. Medical costs lowered in 57.1% of the patients in the SFT group, in the TAU 45.5% and the in PST group 20%. The drop out rate was highest in the PST group (44%; SFT 12.5%; TAU 8.3%). Conclusions: PST and SFT both positively affect the fatigue and QoL scores in patients with Crohn's disease. SFT seems most feasible with fewer dropouts and is therefore a promising new tool in the management of fatigue in Crohn's disease patients.

Revisiting United States valuation of EQ-5D states (Article)

2011-09-01T00:00:00Z

In the original US valuation study of EQ-5D states, all worse-than-dead time trade-off responses (26% of the sample) were divided by 39 to increase the QALY estimates. This transformation has no theoretical justification and motivates this re-examination. Using the publically available dataset, we compared three alternative random utility models: instant (IRUM), angular (ARUM), and episodic (ERUM) models. Each leads to a distinct econometric estimator: mean ratio, ratio of means, and coefficient, respectively. IRUM suggests that 203 of the 243 EQ-5D states are worse-than-dead, which has little face validity compared to ARUM and ERUM (42 and 3 WTD states). ARUM and ERUM estimates are proportionally related such that losses in QALYs are approximately 37% larger under ARUM than ERUM. Compared to ERUM, economic evaluations using ARUM estimates emphasize quality of life, and this difference may influence policy decisions. Either ERUM or ARUM values sets are recommended over the original, transformed set.

Toward a more universal approach in health valuation (Article)

2011-07-01T00:00:00Z

By polling individual responses to hypothetical scenarios, valuation studies estimate population preferences toward health on a quality-adjusted life year (QALY) scale. The scenarios typically involve trade-offs in time (time trade-off (TTO)), risk (standard gamble (SG)), or number of persons affected (person trade-off (PTO)). This paper revisits the QALY assumptions and provides a coherent health econometric approach that unites TTO, SG, and PTO techniques under a common estimator. The proposed approach avoids the use of ratio statistics in QALY estimation and the common convention of arbitrarily changing trade-off responses. As an example, 34% of the TTO responses from the seminal Measurement and Valuation of Health study were changed in the original UK analysis, which led to substantially lower QALY estimates. As a general rule, if the original estimate is less than 0.5 QALYs, add 0.25 QALYs to get the new estimates. Copyright

Deriving reference values and utilities for the QoL-AGHDA in adult GHD (Article)

2011-06-01T00:00:00Z

Background: Quality of life (QoL) measures are important in growth hormone (GH) deficiency (GHD) in adults. Ideally, for use in health economics, QoL should be expressed in utilities. The aim of this study was to obtain reference values and utilities for QoL of GHD in adults in Belgium and the Netherlands. Methods: The study was conducted in three stages: (1) The Quality of Life-Assessment for Growth Hormone Deficiency in Adults (QoL-AGHDA) and the EQ-5D were administered in a representative sample of 6,875 individuals from the Belgian and 1,400 individuals from the general Dutch population. The EQ-5Dindexcan be used to estimate utilities. Using a regression, utilities were predicted from the QoL-AGHDA. (2) QoL-AGHDA scores were obtained from 299 Belgian and 234 Dutch adult patients with GHD and no GH replacement. These scores were converted to utilities and compared the burden of disease with other patient groups. (3) To test the criterion validity, the 'standard' EQ-5Dindexwas used in a subsample of 64 Dutch GHD patients and compared with the predicted utilities. Results: We obtained data from 1,026 Belgian (response rate = 15%) and 1,038 Dutch respondents (response rate = 74%). The Belgian mean QoL-AGHDA value was 6.95 (90% range = 14.00), and the Dutch mean was 5.48 (range = 13.00). The R2of the regression model to predict the EQ-5Dindexwas 0.360 (Belgium) and 0.482 (the Netherlands). We demonstrated a considerable burden of disease in GHD patients, comparable to patients with hypertension or with type II diabetes. The criterion validity was 0.407 (intraclass correlation, ICC). Conclusions: Interventions in GHD can now be evaluated more validly in Belgium and the Netherlands.

Justification for a home-based education programme for kidney patients and their social network prior to initiation of renal replacement therapy (Article)

2011-05-30T00:00:00Z

In this article, an ethical analysis of an educational programme on renal replacement therapy options for patients and their social network is presented. The two main spearheads of this approach are: (1) offering an educational programme on all renal replacement therapy options ahead of treatment requirement and (2) a homebased approach involving the family and friends of the patient. Arguments are offered for the ethical justification of this approach by considering the viewpoint of the various stakeholders involved. Finally, reflecting on these ethical considerations, essential conditions for carrying out such a programme are outlined. The goal is to develop an ethically justified and responsible educational programme.

Memory complaints in chronic stroke patients are predicted by memory self-efficacy rather than memory capacity (Article)

2011-05-01T00:00:00Z

Background: Memory self-efficacy (MSE) is the belief about one's mastery of memory functioning. In healthy elderly, memory complaints are related to MSE rather than to objectively measured memory capacity. MSE has scarcely been studied in patients that suffered a stroke. The aim of this study was twofold: (1) to examine whether memory capacity and MSE can predict the presence of memory complaints in stroke patients, and (2) to study which variables are the best predictors of MSE. Methods: In a cross-sectional study, 136 stroke patients (>18 months after onset) were recruited from April 2008 to November 2009. MSE was measured using the Metamemory in Adulthood questionnaire. Depression, coping and personality were measured using validated questionnaires, and memory performance was measured using the Rivermead Behavioural Memory Test (RBMT) and the Auditory Verbal Learning Test (AVLT). Patients were divided into a 'complaints' and a 'no complaints' group. Results: A lower MSE score was an independent predictor of having memory complaints (adjusted odds ratio: 0.422; p = 0.000), adjusted for age and depression. The RBMT and AVLT scores did not predict the presence of memory complaints (p > 0.263). Presence of memory complaints and depression were the strongest predictors of MSE (B = -1.748, p = 0.000; B = -0.054, p = 0.000), followed by word fluency, not having a partner and side of stroke (B = 0.038, p = 0.012; B = -0.517, p = 0.082; B = -0.479, p = 0.088). Conclusions: Memory complaints are predicted by MSE rather than memory capacity. MSE memory training might be an effective training strategy for reducing memory complaints in selected chronic stroke patients. Copyright

Religious attitudes towards living kidney donation among Dutch renal patients (Article)

2011-04-22T00:00:00Z

Terminal kidney patients are faced with lower quality of life, restricted diets and higher morbidity and mortality rates while waiting for deceased donor kidney transplantation. Fortunately, living kidney donation has proven to be a better treatment alternative (e.g. in terms of waiting time and graft survival rates). We observed an inequality in the number of living kidney transplantations performed between the non-European and the European patients in our center. Such inequality has been also observed elsewhere in this field and it has been suggested that this inequality relates to, among other things, attitude differences towards donation based on religious beliefs. In this qualitative research we investigated whether religion might indeed (partly) be the explanation of the inequalities in living donor kidney transplants (LDKT) among non-European patients. Fifty patients participated in focus group discussions and in-depth interviews. The interviews were conducted following the focus group method and analyzed in line with Grounded Theory. The qualitative data analyses were performed in Atlas.ti. We found that religion is not perceived as an obstacle to living donation and that religion actually promotes helping and saving the life of a person. Issues such as integrity of the body were not seen as barriers to LDKT. We observed also that there are still uncertainties and a lack of awareness about the position of religion regarding living organ donation within communities, confusion due to varying interpretations of Holy Scriptures and misconceptions regarding the process of donation. Faith leaders play an important educational role and their opinion is influential. This study has identified modifiable factors which may contribute to the ethnic disparity in our living donation program. We argue that we need to strive for more clarity and awareness regarding the stance of religion on the issue of living donation in the local community. Faith leaders could be key figures in increasing awareness and alleviating uncertainty regarding living donation and transplantation.

Development of the Rotterdam Renal Replacement Knowledge-Test (R3K-T) (Research Report)

2011-04-01T00:00:00Z

Introduction: There is currently a lack of validated or standardized measures to test the level of knowledge among renal patients regarding kidney disease and available treatment options. We conducted a pilot study to develop a questionnaire measuring knowledge of kidney disease, dialysis and transplantation options. The main aim of this study was to develop such an instrument for further use in research and practice. Method: An initial 61 item pool was generating by searching the literature and consulting experts in this area for additional items. This questionnaire was completed by 182 renal disease patients from 4 dialysis centers in the Rotterdam municipality. A factor analysis was conducted using the maximum likelihood factor method followed by direct oblimin rotation to obtain variance explained by each factor. Questions that loaded ≥ .30 on a factor were included. Results: Twenty-seven patients (24%) were in the pre-RRT phase, 60 (54%) were undergoing haemodialysis, 16 (14%) were undergoing peritoneal dialysis, and 9 (8%) had a graft failure. Forty (36%) were female and 72 (64%) were male. Age range 19-87 (median = 59). A factor analysis was conducted to reduce the number of items. This resulted in 30 items consisting of 5 subscales regarding knowledge on: kidney disease (5 items, α = .37), peritoneal dialysis (4 items, α = .73), haemodialysis (4 items, α = .41), kidney transplantation (12 items, α = .86), quality of life (5 items, α = .59). Discussion: This study aimed to develop an instrument with which knowledge of kidney disease and the related treatment options can be reliably measured. This study resulted in a short and easy to administer knowledge questionnaire. We intend to further explore the psychometric properties of this instrument and develop norm scores for the general public and patients at various stages of the disease and treatment. We have also considered translated versions of this questionnaire.

Cost-effective psychotherapy for personality disorders in the Netherlands: The value of further research and active implementation (Article)

2011-03-01T00:00:00Z

Objective: In a budget-constrained health care system, decisions regarding resource allocation towards research and implementation are critical and can be informed by cost-effectiveness analysis. The objective of this study was to assess the societal value of conducting further research to inform reimbursement decisions and implementation of cost-effective psychotherapy for clusters B and C personality disorders (PDs). Methods: Value of information and value of implementation analyses were conducted using previously developed cost-effectiveness models for clusters B and C PDs to evaluate the parameters that contribute to most of the decision uncertainty, and to calculate the population expected values of perfect information (pEVPI) and perfect implementation (pEVPIM). Results: The pEVPI was estimated to be €425 million for cluster B PDs and €315 million for cluster C PDs, indicating that gathering additional evidence is expected to be cost-effective. The categories of parameters for which reduction of uncertainty would be most valuable were transition probabilities and health state costs. The pEVPIM was estimated to be €595 million for cluster B PDs and €1,372 million for cluster C PDs, suggesting that investing in implementation of cost-effective psychotherapy is likely to be worthwhile. Conclusions: The societal value of additional research on psychotherapy for clusters B and C PDs is substantial, especially when prioritizing information on transition probabilities and health state costs. Active implementation of cost-effective treatment strategies into clinical practice is likely to improve the efficiency of health care provision in The Netherlands. Copyright

Effectiveness of different modalities of psychotherapeutic treatment for patients with cluster C personality disorders: results of a large prospective multicentre study. (Article)

2011-01-01T00:00:00Z

Abstract BACKGROUND: No previous studies have compared the effectiveness of different modalities of psychotherapeutic treatment, as defined by different settings and durations, for patients with cluster C personality disorders. The aim of this multicentre study was to compare the effectiveness of 5 treatment modalities for patients with cluster C personality disorders in terms of psychiatric symptoms, psychosocial functioning, and quality of life. The following treatment modalities were compared: long-term outpatient (more than 6 months), short-term day hospital (up to 6 months), long-term day hospital, short-term inpatient, and long-term inpatient psychotherapy. METHODS: The study was conducted between March 2003 and June 2008 in 6 mental health care centres in the Netherlands, with a sample of 371 patients with a DSM-IV-TR axis-II cluster C diagnosis. Patients were assigned to 5 different modalities of psychotherapeutic treatment, and effectiveness was assessed at 12 months after baseline. An intention-to-treat analysis was conducted for psychiatric symptoms (Brief Symptom Inventory), psychosocial functioning (Outcome Questionnaire-45), and quality of life (EQ-5D), using multilevel statistical modelling. As the study was non-randomised, the propensity score method was used to control for initial differences. RESULTS: Patients in all treatment groups had improved on all outcomes 12 months after baseline. Patients receiving short-term inpatient treatment showed more improvement than patients receiving other treatment modalities. CONCLUSIONS: Psychotherapeutic treatment, especially in the short-term inpatient modality, is an effective treatment for patients with cluster C personality disorders.

Effectiveness of outpatient, day hospital, and inpatient psychotherapeutic treatment for patients with cluster B personality disorders (Article)

2010-10-23T00:00:00Z

Abstract Background: For patients with cluster B personality disor- ders there is no consensus regarding the optimal treatment setting. The aim of this study was to compare the effective- ness of different psychotherapeutic settings for patients with cluster B personality disorders, i.e. outpatient, day hos- pital, and inpatient treatment. Methods: The study was con- ducted between March 2003 and June 2008 in 6 mental health care centres in the Netherlands, with a sample of 207 patients with a DSM-IV-TR axis II cluster B diagnosis. Patients were assigned to 3 different settings of psychotherapeutic treatment and effectiveness was assessed at 18 months after baseline. An intention-to-treat analysis was conducted for psychiatric symptoms (Brief Symptom Inventory), psychoso- cial functioning (Outcome Questionnaire-45), and quality of life (EQ-5D), using multilevel statistical modelling. As the study was non-randomised, the propensity score method was used to control for initial differences. Results: Patients in all 3 settings improved significantly in terms of psychiatric symptoms, social and interpersonal functioning, and quality of life 18 months after baseline. The inpatient group showed the largest improvements. The comparison of outpatient and inpatient treatment regarding psychiatric symptoms showed a marginally significant result (p = 0.057) in favour of inpatient treatment. Conclusions: Patients with cluster B personality disorders improved in all investigated treatment settings, with a trend towards larger improvements of psy- chiatric symptoms in the inpatient setting compared to the outpatient setting. Specialised inpatient treatment should be considered as a valuable treatment option for cluster B personality disorders, both in research and in clinical prac- tice.

Living kidney donation among ethnic minorities: A Dutch qualitative study on attitudes, communication, knowledge and needs of kidney patients (Internal Report)

2010-08-01T00:00:00Z

Background: Terminal kidney patients are faced with lower quality of life during dialysis treatment, restricted diets and high morbidity and mortality rates while waiting for a deceased donor kidney transplantation. Fortunately, living donor kidney transplantation offers an alternative with considerable advantages in terms of waiting time and graft survival rates. Nevertheless, we observed an inequality in the proportion of living kidney transplantations performed between the non-European patients and the European patients in our centre. To date little is known about the factors contributing towards this racial disparity. Previous research from our centre did not find any medical reasons to explain this racial disparity. We believe that non-medical psychosocial and cultural factors predominantly account for this discrepancy. Purpose Focus group discussions and in-depth interviews were conducted in order to gain insight in the attitudes, (non-)communication and knowledge of our non-European patients (compared to European patients) regarding living donor kidney transplantation (LDKT). Additionally, we investigated their attitudes towards professional support in finding an eligible living donor. Methods: The interviews were held in line with the focus group method and analyzed according to the grounded theory. The interviews were focused on six main topics (kidney transplantation, living kidney donation, communication, information, knowledge and intervention needs). European patients were included as a comparison group. The qualitative data analyses were performed in Atlas.ti. Results:We found nearly all our patient to be in favour of a living kidney transplantation (96%). However multiple prohibiting intertwined factors play a role when actually considering a living donor. We found four major barriers to the living donor transplantation process in our non-European patients: 1) not (so easily) comprehensible non-patient-centered information 2) cognitions and emotions (based on fears, concerns and misconceptions) 3) a state of basically non-communication with the potential donor(s) on this issue (as a consequence of personal and cultural beliefs) 4) and social influences. We also found some similar factors playing a role in the donation course of our European patients without a living donor. Finally, our patients held a welcoming attitude towards an intervention aimed at assisting them getting though the living donation program. Discussion: This study has identified several modifiable determinants underlying racial disparity in our living donor kidney transplantation program and investigated patients’ attitude towards two interventions aimed at alleviating this inequality. We realize that our list of barriers may not be thorough enough and surely more is to be said on this topic, the findings offer possible targets for intervention. In accordance with our patients’ preference, we argue that a home-based education best suits the complexity of issues and patients’ personal needs.

Indicatoren voor de zorgtoewijzing bij persoonlijkheidsstoornissen: resultaten van een concept map analyse (Internal Report)

2010-08-01T00:00:00Z

Using the concept map method, this study revealed patient characteristics that are important for treatment selection decisions in patients with personality disorders. Concept mapping is a specific type of structured conceptualization process and describes the underlying structure of specific phenomena. The method uses qualitative and quantitative methods. In this study, we integrated a literature investigation with the opinions of 29 experts in the field of treatment allocation and/or personality disorders. Our goal was to reduce and describe the number of patient characteristics that are important for treatment allocation in personality disorders. The concept map procedure resulted in eight patient characteristics: (1) severity of symptoms, (2) severity of personality pathology, (3) ego-adaptive capacity, (4) motivation and capacity for a therapeutic alliance, (5) patient’s social system, (6) social demographic variables, (7) traumata, (8) treatment history and physical examination. This report describes in detail the concept mapping procedure and the outcomes are discussed.

Encouraging psychological outcomes after altruistic donation to a stranger (Article)

2010-06-01T00:00:00Z

In a growing number of transplant centers worldwide, altruistic donors are accepted to anonymously donate a kidney to a stranger. An important hesitation to expand these transplantation programs is the fear of evoking psychological distress in the altruistic donor after donation. To what extent this fear is justified has not yet been systematically investigated. In this study, 24 altruistic donors were interviewed on average 2 years after donation. Lifetime mental health history, current psychological complaints, satisfaction with and impact of the donation on well-being, motives for donation, communication with recipient and donation experience were assessed. Altruistic donors report a considerable positive impact of donation on psychological well-being, whereas negative impact was limited. Satisfaction with donation was very high. Although a history of a psychiatric diagnosis was ascertained in almost half of the donors, psychological complaints before and after donation were comparable to national average norm scores. Motives for donation were genuine and the experience of donation generally conformed to their expectations. In conclusion, living kidney donation to a stranger does not appear to exacerbate psychological complaints. Moreover, altruistic donors report considerable satisfaction and personal benefit. The exceptional gift of altruistic donors can contribute toward solving the current organ shortage issue.

Cost-effectiveness of psychotherapy for cluster B personality disorders (Article)

2010-05-01T00:00:00Z

Background Recommendations on current clinical guidelines are informed by limited economic evidence. Aims A formal economic evaluation of three modalities of psychotherapy for patients with cluster B personality disorders. Method A probabilistic decision-analytic model to assess the cost- effectiveness of out-patient, day hospital and in-patient psychotherapy over 5 years in terms of cost per recovered patient-year and cost per quality-adjusted life-year (QALY). Analyses were conducted from both societal and payer perspectives. Results From the societal perspective, the most cost-effective choice switched from out-patient to day hospital psychotherapy at a threshold of e12 274 per recovered patient-year; and from day hospital to in-patient psychotherapy at e113 298. In terms of cost per QALY, the optimal strategy changed at e56 325 and e286 493 per QALY respectively. From the payer perspective, the switch points were at e9895 and e155 797 per recovered patient-year, and e43 427 and e561 188 per QALY. Conclusions Out-patient psychotherapy and day hospital psychotherapy are the optimal treatments for patients with cluster B personality disorders in terms of cost per recovered patient- year and cost per QALY. Declaration of interest None.

Avoiding or reversing Hartmann's procedure provides improved quality of life after perforated diverticulitis (Article)

2010-04-01T00:00:00Z

INTRODUCTION: The existing literature regarding acute perforated diverticulitis only reports about short-term outcome; long-term following outcomes have not been assessed before. The aim of this study was to assess long-term quality of life (QOL) after emergency surgery for perforated diverticulitis. PATIENTS AND METHODS: Validated QOL questionnaires (EQ-VAS, EQ-5D index, QLQ-C30, and QLQ-CR38) were sent to all eligible patients who had undergone emergency surgery for perforated diverticulitis in five teaching hospitals between 1990 and 2005. Differences were compared between patients that had undergone Hartmann's procedure (HP) or resection with primary anastomosis (PA) and also compared to a sex- and age-matched sample of healthy subjects. RESULTS: Of a total of 340 patients, only 150 patients (44%) were found still alive in July 2007 (median follow-up 71 months). The response rate was 87%. In patients with PA, QOL was similar to the general population, whereas QOL after HP was significantly lower. The presence of a stoma was found to be an independent factor related to worse QOL. The deterioration in QOL was mainly due to problems in physical function and body image. CONCLUSIONS: Survivors after perforated diverticulitis had a worse QOL than the general population, which was mainly due to the presence of an end colostomy. QOL may improve if these stomas are reversed or not be performed in the first place.

Valuation of EQ-5D health states in Poland: First TTO-based social value set in central and Eastern Europe (Article)

2010-03-01T00:00:00Z

Objective: Currently, there is no EQ-5D value set for Poland. The primary objective of this study was to elicit EQ-5D Polish values using the time trade-off (TTO) method. Methods: Face-to-face interviews with visitors of inpatients in eight medical centers in Warsaw, Skierniewice, and Puławy were carried out by trained interviewers. Quota sampling was used to achieve a representative sample of the Polish population with regard to age and sex. Modified protocol from the Measurement and Value of Health study was used. Each respondent ranked 10 health states and valued 4 health states using the visual analog scale and 23 using the TTO. Mean and variance stability tests were performed to determine whether using a larger number of health states per respondent would yield credible results. Modeling included random effects and random parameters models. Results: Between February and May 2008, 321 interviews were performed. Modeling based on 6777 valuations resulted in an additive model with all coefficients statistically significant, R2 equal to 0.45, and value -0.523 for the worst possible health state. Means and variance did not differ significantly for states valued in the middle and at the end of the TTO exercise. Conclusions: This is the first EQ-5D value set based on TTO in Central and Eastern Europe so far. Because the values differ considerably from those elicited in Western European countries, its use should be recommended for studies in Poland. Increasing the number of health states that each respondent is asked to value using TTO seems feasible and justifiable.

The multiple propensity score as control for bias in the comparison of more than two treatment arms: An introduction from a case study in mental health (Article)

2010-02-01T00:00:00Z

Background and Objective: The propensity score method (PS) has proven to be an effective tool to reduce bias in nonrandomized studies, especially when the number of (potential) confounders is large and dimensionality problems arise. The PS method introduced by Rosenbaum and Rubin is described in detail for studies with 2 treatment options. Since in clinical practice we are often interested in the comparison of multiple interventions, there was a need to extend the PS method to multiple treatments. It has been shown that in theory a multiple PS method is possible. So far, its practical application is rare and a practical introduction lacking. Methods: A practical guideline to illustrate the use of the multiple PS method is provided with data from a mental health study. The multiple PS is estimated with a multinomial logistic regression analysis. The multiple PS is the probability of assignment to each treatment category. Subsequently, to estimate the treatment effects while controlling for initial differences, the multiple PSs, calculated for each treatment category, are included as extra predictors in the regression analysis. Results: With the multiple PS method, balance was achieved in all relevant pretreatment variables. The corrected estimated treatment effects were somewhat different from the results without control for initial differences. Conclusions: Our results indicate that the multiple PS method is a feasible method to adjust for observed pretreatment differences in nonrandomized studies where the number of pretreatment differences is large and multiple treatments are compared.

Metamemory and memory test performance in stroke patients (Article)

2009-10-01T00:00:00Z

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

A formal translation of the Assimilation-Accommodation Coping Scale from German to Dutch (Internal Report)

2009-09-01T00:00:00Z

The Assimilation-Accommodation Coping Scale was developed in Germany by Brandtstädter and Renner and applied in the UK and the Netherlands. A formal translation was never reported. Such formal translation was warranted as we found ambivalent language and atypical sentences in the Dutch translation. We therefore organised a formal forwards and backwards translation from German to Dutch. This report gives the details of that process and present the new formal translated Assimilation-Accommodation Coping List in Dutch.

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

2009-07-01T00:00:00Z

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

Large-scale screening and subsequent effects of migraine treatment on the work floor in the Netherlands (Article)

2009-06-01T00:00:00Z

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.

Modeling Ranking, Time Trade-Off and Visual Analogue Scale Values for EQ-5D Health States (Article)

2009-06-01T00:00:00Z

Abstract BACKGROUND: There is rising interest in eliciting health state valuations using rankings. Due to their relative simplicity, ordinal measurement methods may offer an attractive practical alternative to cardinal methods, such as time trade-off (TTO) and visual analog scale (VAS). In this article, we explore alternative models for estimating cardinal health state values from rank responses in a unique multicountry database. We highlight an estimation challenge pertaining to health states just below perfect health (the "nonoptimal gap") and propose an analytic solution to ameliorate this problem. METHODS: Using a standardized protocol developed by the EuroQol Group, rank, VAS, and TTO responses were collected for 43 health states in 8 countries: Slovenia, Argentina, Denmark, Japan, Netherlands, Spain, United Kingdom, and United States, yielding a sample of 179,431 state responses from 11,483 subjects. States were described using the EQ-5D system, which allows for 3 different possible levels on 5 different dimensions of health. We estimated conditional logit and probit regression models for rank responses. The regressions included 17 health state attribute variables reflecting specific levels on each dimension and counts of different levels across dimensions. This flexible specification accommodates previously published valuation models, such as models applied in the United Kingdom and United States. In addition to fitting standard conditional logit and probit models, which assume equal variance across health states (homoscedasticity), we examined a heteroscedastic probit model that assumes no variance for the 2 points anchoring the scale ("optimal health" and "dead") and relaxes the equal-variance assumption for all other states. Rank-based predictions for the 243 unique states defined by the EQ-5D system were compared with predictions from conventional linear models fitted to TTO and VAS responses. RESULTS: By construction, the TTO and VAS models assume no variance around the anchoring states of optimal health and dead. Mimicking this assumption in the probit rank models helps dissolve the nonoptimal gap. For all other states, variances in TTO and VAS were negatively associated with mean values, which contradict the assumption of homoscedasticity. Estimated health state values from the heteroscedastic probit model for the ranking data were highly correlated with predictions from both TTO and VAS models for the 243 EQ-5D states. Between VAS and rank-based estimates, Lin's rho, a measure of agreement, was over 0.98 with a mean absolute difference of 0.028. Corresponding measures of agreement between rank and TTO estimates were 0.96 and 0.12, which is similar to the agreement between VAS and TTO. CONCLUSIONS: Rank-based valuation techniques, which offer advantages of flexibility, generalizability, and ease of administration, may be attractive substitutes for TTO and VAS in the measurement of societal values for health outcomes.

Keep it simple: ranking health states yields values similar to cardinal measurement approaches (Article)

2009-03-01T00:00:00Z

Abstract OBJECTIVES: To examine the relationship between ordinal and cardinal valuation of health states. STUDY DESIGN AND SETTING: We analyzed rank, visual analog scale (VAS), and time trade-off (TTO) responses for 52 health states defined using the EQ-5D classification system developed by the EuroQol Group. We analyzed 179,431 responses from 11,483 subjects in eight countries: Slovenia, Argentina, Denmark, Japan, Netherlands, Spain, United Kingdom, and United States. We first compared responses across methods by frequency of ties and values below dead. Ordinal associations between methods were evaluated using Spearman's correlation and Kendall's tau. Next, we estimated numerical values from rank responses using country-specific conditional logit models. After anchoring predicted values on a common scale, we further investigated the cardinal relationships between rank, VAS, and TTO-based values using Pearson's rho and quadratic regression. RESULTS: For each country, rank responses are less likely than TTO responses to be tied and to indicate that states are worse than dead. In all countries, rank responses show a strong linear correlation with both TTO (Pearson's rho=0.88-0.99) and VAS (rho=0.91-0.98) responses. However, rank-based values imply greater decrements in health for mild states than cardinal values. CONCLUSIONS: Illiteracy and innumeracy can hinder implementation of complex preference elicitation techniques in diverse settings and populations. These results indicate that ranking exercises may provide an attractive alternative for health-state valuation.

Keep it simple: ranking health states yields values similar to cardinal measurement approaches (Article)

2009-03-01T00:00:00Z

A prospective study on coping strategies and quality of life in patients after stroke, assessing prognostic relationships and estimates of cost-effectiveness (Article)

2009-03-01T00:00:00Z

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.

The episodic random utility model unifies time trade-off and discrete choice approaches in health state valuation (Article)

2009-01-13T00:00:00Z

ABSTRACT: BACKGROUND: To present an episodic random utility model that unifies time trade-off and discrete choice approaches in health state valuation. METHODS: First, we introduce two alternative random utility models (RUMs) for health preferences: the episodic RUM and the more common instant RUM. For the interpretation of time trade-off (TTO) responses, we show that the episodic model implies a coefficient estimator, and the instant model implies a mean slope estimator. Secondly, we demonstrate these estimators and the differences between the estimates for 42 health states using TTO responses from the seminal Measurement and Valuation in Health (MVH) study conducted in the United Kingdom. Mean slopes are estimates with and without Dolan's transformation of worse-than-death (WTD) responses. Finally, we demonstrate an exploded probit estimator, an extension of the coefficient estimator for discrete choice data that accommodates both TTO and rank responses. RESULTS: By construction, mean slopes are less than or equal to coefficients, because slopes are fractions and, therefore, magnify downward errors in WTD responses. The Dolan transformation of WTD responses causes mean slopes to increase in similarity to coefficient estimates, yet they are not equivalent (i.e., absolute mean difference = 0.179). Unlike mean slopes, coefficient estimates demonstrate strong concordance with rank-based predictions (Lin's rho = 0.91). Combining TTO and rank responses under the exploded probit model improves the identification of health state values, decreasing the average width of confidence intervals from 0.057 to 0.041 compared to TTO only results. CONCLUSION: The episodic RUM expands upon the theoretical framework underlying health state valuation and contributes to health econometrics by motivating the selection of coefficient and exploded probit estimators for the analysis of TTO and rank responses. In future MVH surveys, sample size requirements may be reduced through the incorporation of multiple responses under a single estimator.

Strategies to advance living kidney donation: a single center's experience. (Article)

2009-01-01T00:00:00Z

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).

Finding legitimacy for the role of budget impact in drug reimbursement decisions (Article)

2009-01-01T00:00:00Z

OBJECTIVES: Research has shown that effectiveness, cost-effectiveness, and severity of illness each play a role in drug reimbursement decisions. However, the role of budget impact in such decisions is less obvious. Policy makers almost always demand a budget impact estimate yet seem reluctant to formally include budget impact as a rationing criterion. Health economists even reject budget impact as a legitimate criterion. For these reasons, it is important to examine its use in rationing decisions, and rationales underlying its use. METHODS: We trace several rationales supporting the use of budget impact through a literature review, supplemented by semistructured interviews with eleven key stakeholders involved in drug reimbursement decisions in the Netherlands. RESULTS: Budget impact arguments are used in certain instances, although policy makers appear uncomfortable with its use because well described rationales still are lacking. In addition, we identify the following rationales to support budget impact as a rationing criterion: opportunity costs, loss aversion, uncertainty and equal opportunity. CONCLUSIONS: Budget impact plays a role in drug reimbursement decisions and has rationales to support its use. However, policy makers do not easily admit that they consider budget impact and are even reluctant to explicitly use budget impact as a formal criterion. A debate would strengthen the theoretical foundation of budget impact as a legitimate criterion in the context of drug reimbursement decisions. Such discussion of budget impact's role will also enhance policy-makers' accountability.

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

2009-01-01T00:00:00Z

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

The Use of Propensity Score Methods in Psychotherapy Research (Article)

2009-01-01T00:00:00Z

Abstract BACKGROUND: Randomized controlled trials are considered the best scientific proof of effectiveness. There is increasing concern, though, about their feasibility in psychotherapy research. We discuss a quasi-experimental study design for situations in which a randomized controlled trial is not feasible. Here, as an alternative strategy, the propensity score (PS) method is used to correct for selection bias. METHODS: We used data from a Dutch research project, SCEPTRE (Study on Cost-Effectiveness of Personality Disorder Treatment). The sample consisted of 749 psychotherapy patients with personality pathology. We tested whether the PS method was useful and applicable. We examined differences between 2 treatment groups (short vs. long treatment duration) in pretreatment characteristics before and after PS correction. This revealed the impact of the PS on outcome differences. RESULTS: The PS offered statistical control over observed pretreatment differences between patients in a non-randomized study. CONCLUSIONS: When a randomized controlled trial is not possible, this quasi-experimental design using the PS could be a feasible alternative. Its advantages and limitations are discussed. Implemented carefully, this method is promising for future effectiveness research.

Avoiding the issue: Patients' (non)communication with potential living kidney donors (Article)

2009-01-01T00:00:00Z

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.

Logistic feasibility of health related quality of life measurement in clinical practice: results of a prospective study in a large population of chronic liver patients (Article)

2008-10-01T00:00:00Z

Abstract
BACKGROUND: The objective of the present study was to provide a complete and detailed report of technical and logistical feasibility problems with the implementation of routine computerized HRQoL measurement at a busy outpatient department of Hepatology that can serve as a tool for future researchers interested in the procedure. METHODS: Practical feasibility was assessed by observing problems encountered during the development of the computer program, observing patients' ability to complete the HRQoL questionnaires, monitoring the number of times that patients completed the HRQoL questionnaires and observing logistics at the outpatient department. Patients' reasons for not completing the HRQoL questionnaires were assessed retrospectively by means of a mailed questionnaire. Physicians' attitudes towards the availability of computerized HRQoL information about their patients were assessed by means semi-structured interviews and by means of checklists administered after each consultation with s study participant. RESULTS: All physicians (n = 11) and 587 patients agreed to participate in the study. Practical feasibility problems concerned complicated technical aspects of developing a user-friendly computer program and safe data transmission over the Internet, patients' lack of basic computer skills and patients' lack of compliance (completion of questionnaires on only 43% of the occasions). The main reason given for non-compliance was simply forgetting, which seemed to be related to reception employees' passive attitude towards sending patients to the computer. Physicians were generally positive about the instant computerized availability of HRQoL information. They requested the information in 92% of the consultations and found the information useful in 45% of the consultations, especially when it provided them with new information. CONCLUSION: This study was among the first to implement the complete procedure of routine computerized HRQoL measurements in clinical practice and to subsequently describe the feasibility issues encountered. It was shown that the attitudes of physicians were generally positive. Several barriers towards successful implementation of such a procedure were encountered, and subsequently solutions were provided. Most importantly, when implementing routine computerized HRQoL measurements in clinical practice, assistance of an IT professional for the development of a tailor-made computer program, availability of questionnaires in multiple languages and the use of touch-screen computers to optimise patient participation are essential. Also, all staff of the department concerned should approve of the intervention and consider it as part of standard clinical routine if successful implementation is to be obtained.

Memory self-efficacy and psychosocial factors in stroke (Article)

2008-09-01T00:00:00Z

Objective: To explore whether Memory Self-efficacy is related to depression, neuroticism and coping in patients after stroke, as it is in healthy elderly subjects. Design: A cross-sectional design. The relation between Memory Self-efficacy and psychosocial factors was analysed using a Mann-Whitney U test and non-parametric Spearman correlations. Patients: Seventeen male and 6 female patients after stroke from an inpatient rehabilitation setting were included. Methods: Memory Self-efficacy, depression, neuroticism and coping were assessed with validated questionnaires. Patients with severe aphasia, subarachnoidal haemorrhage or subdural haematomas were excluded. Results: As in healthy elderly subjects, higher depression ratings are significantly related to lower Memory Self-efficacy ratings (Z=-2.13; p=0.033). Lower Memory Self-efficacy seems related to higher neuroticism ratings and a more passive coping style score (Z=-1.54; p=0.123; Z=-1.42; p=0.155, respectively). The Spearman correlations confirm these finding (p<0.10). Conclusion: This study replicated the relationships between Memory Self-efficacy and depression and neuroticism found in a healthy population, in an inpatient stroke population. Future research on Memory Self-efficacy in patients after stroke should focus on other potential determinants such as awareness and, ultimately, on the effectiveness and efficacy of interventions aimed at Memory Self-efficacy to improve participation and quality of life. © 2008 The Authors. Journal Compilation

Quality of health care and patient satisfaction in liver disease: The development and preliminary results of the QUOTE-Liver questionnaire (Article)

2008-06-20T00:00:00Z

Background: Consensus on how to adequately measure patient satisfaction with health care is limited, and has led to the development of many questionnaires with various methodological problems. The objective of this study was to develop a liver disease- and care-specific patient satisfaction instrument on the basis of previously tested methodology in patient satisfaction measurement, the so called QUOTE- series: Quality Of health care services Through the patients' Eyes. QUOTE methodology aims to standardise the measurement of satisfaction as the discrepancy between patients' needs, and the extent to which these needs are being met. Methods: As part of the QUOTE methodology routine, 11 Patients with chronic liver disease from the Erasmus MC (Rotterdam, the Netherlands) participated in focus-group meetings on patient satisfaction with the provided service at the outpatient hepatology clinic. Twenty-eight other patients were invited to rank the items generated during the focus-group meetings according to importance. With this information, the QUOTE-Liver was constructed. Face validity, construct validity, content validity, and reliability of the newly developed questionnaire were assessed in a test sample of 152 patients with chronic liver disease. Results: Two liver-disease specific, and the 18 items ranked as most important were included in the QUOTE-Liver. Face validity and content validity were acceptable: neither patients (n = 152) nor psychologists (n = 3) or a hepatologist suggested any extra items to be included. Construct validity was good: the overall score correlated significantly with the Visual Analogue Scale (VAS) measuring overall satisfaction (r = 0.69, p < 0.01). The reliability of the QUOTE-Liver was excellent (α = 0.90). Conclusion: The QUOTE-Liver is an easy to complete instrument based on standardized state-of-the-art satisfaction measurement methodology. Preliminary evidence for its validity and reliability was demonstrated. The QUOTE-liver covers those aspects of satisfaction that CLD patients consider to be important when visiting the outpatient department of hepatology. Even though further substantiating of the favourable psychometric findings is desirable, it seems to be a useful instrument that can be used to identify those aspects of care that need improvement in order to optimise the provision of health care for patients with chronic liver disease.

Public survey of financial incentives for kidney donation (Article)

2008-03-01T00:00:00Z

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.

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

2008-03-01T00:00:00Z

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

The psychological evaluation of Samaritan kidney donors: A systematic review (Article)

2008-02-01T00:00:00Z

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.

Cost-effectiveness of neonatal surgery: First greeted with scepticism, now increasingly accepted (Article)

2008-02-01T00:00:00Z

Mortality rates in neonatal surgery have dropped markedly, illustrating the enormous progress made. Yet, new questions have arisen. To mention one, health care budgets have tightened. It follows that the effects of medical interventions should be weighted against their costs. As evidence was particularly sparse, we set out to analyse cost-effectiveness of neonatal surgery. The purpose of this article is to summarise our findings and to review recent studies. Moreover, this article explains the relevance of cost-effectiveness analysis and explores how cost-effectiveness interacts with other determinants of health care priority setting. Our research revealed that treatments for two common diagnostic categories in neonatal surgery (congenital anorectal malformations and congenital diaphragmatic hernia) produce good cost-effectiveness. Other groups also published cost-effectiveness studies in the field of neonatal surgery, although their number is still small. Contemporaneously, the economic aspects of health care have captured the interest of policy makers. Importantly, this is not to say that there are no other factors playing a role in priority setting, foremost among which are ethical questions and arguments of equity. This article concludes that, according to present evidence, neonatal surgery yields good value for money and contributes to equity in health.

Strengthening the Status of Psychotherapy for Personality Disorders: An Integrated Perspective on Effects and Costs (Article)

2007-12-01T00:00:00Z

Objective: Despite scientific evidence of effectiveness, psychotherapy for personality disorders is not yet fully deployed, nor is its reimbursement self-evident. Both clinicians and health care policy-makers increasingly rely on evidence-based medicine and health economics when determining a treatment of choice and reimbursement. This article aims to contribute to that understanding by applying these criteria on psychotherapy as a treatment for patients with personality disorder. Method: We have evaluated the available empirical evidence on effectiveness and cost-effectiveness, and integrated this with “necessity of treatment” as a moderating factor. Results: The effectiveness of psychotherapy for personality disorders is well documented with favourable randomized trial results, 2 metaanalyses, and a Cochrane review. However, the evidence does not yet fully live up to modern standards of evidence-based medicine and is mostly limited to borderline and avoidant personality disorder. Data on cost-effectiveness suggests that psychotherapy for personality disorders may lead to cost-savings. However, state-of-the-art cost-effectiveness data are still scarce. An encouraging factor is that the available studies indicate that patients with personality disorder experience a high burden of disease, stressing the necessity of treatment. Conclusions: When applying an integrated vision on outcome, psychotherapy can be considered not only an effective treatment for patients with personality disorder but also most likely a cost-effective and necessary intervention. However, more state-of-the-art research is required before clinicians and health care policy decision makers will fully appreciate the benefits of psychotherapy for personality disorders. Considerable progress is possible if researchers focus their efforts on evidence-based medicine and cost-effectiveness research.

Critical review of generic and dermatology-specific health-related quality of life instruments (Article)

2007-12-01T00:00:00Z

The measurement of health-related quality of life (HRQOL) is increasingly important in patients with skin diseases. Despite the availability of a variety of instruments and new psychometric techniques, there is no consensus as to which HRQOL instruments are to be preferred in dermatology. The objective of this review is to evaluate the generic HRQOL measures (i.e., health profiles) that have been used in dermatology (Short-Form-36 (SF-36) and -12, NHP, SIP, World Health Organization Quality of Life (WHOQOL)-100 and -BREF) and all dermatology-specific HRQOL measures (Dermatology Life Questionnaire Index, Skindex-29, -16, and -17, Dermatology Quality of Life Scales, and Dermatology-Specific Quality of Life). Criteria for evaluation were adapted from existing guidelines and included conceptual and measurement model, reliability, validity, responsiveness, item functioning, meaning of scores, administrative burden, respondent burden, the availability of alternative forms, and of cultural and language adaptations. Furthermore, an overview of skin diseases in which the included HRQOL tools have been used is presented. Although the selection of the appropriate HRQOL instrument remains a trade-off between various psychometric properties and research objectives, for now, we recommend the combination of SF-36 and Skindex-29 as the instruments of choice in dermatology. Promising new instruments for future research are the WHOQOL and the Skindex-17.

Psychological barriers for living kidney donation: How to inform the potential donors? (Article)

2007-10-01T00:00:00Z

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.

Influence of coping styles on quality of life in men with new and increasing lower urinary tract symptoms: The Krimpen study in community-dwelling men (Article)

2007-10-01T00:00:00Z

Objective: The present study aims to determine the influence of coping on quality of life (QOL) in elderly men developing lower urinary tract symptoms (LUTS). Materials and Methods: Longitudinal population-based study with a follow-up period of 6.5 years on 1,688 men aged 50-78 years. Data were collected through self-administered questionnaires, including the Sickness Impact Profile (SIP, three domains), Inventory of Subjective Health (ISH), International Prostate Symptom Score (IPSS), and the Utrecht Coping List (UCL). Various physical and urological measurements were completed. Multiple linear regressions were used to determine the change in QOL in men with incident LUTS in relation to coping behavior. Results: Overall no significant association is found between changes in LUTS with a change in QOL. However, a positive change in QOL is significantly associated with a change in LUTS when men use the coping style active problem solving and a negative relation exists with coping style reassuring thoughts. Conclusion: Different coping styles have a different impact on the relation between a change in LUTS and a change in generic QOL in community-dwelling elderly men. This makes a future exploration of the clinical treatment possibilities warranted. Copyright

On the assessment of preferences for health and duration: Maximal endurable time and better than dead preferences (Article)

2007-09-01T00:00:00Z

BACKGROUND: Several studies revealed difficulties with the valuation and analysis of health states deemed worse than dead. These problems may be linked to maximal endurable time (MET) preferences, the phenomenon that for severe states better than dead (BTD), shorter durations are often preferred to longer durations. OBJECTIVE: To test the association between the duration of health states and their valuation. METHODS: A representative sample of 123 Dutch respondents (age range, 18-45 years) valued 5 EQ-5D health states. With a straightforward method using BTD preferences, respondents indicated whether a state of a certain duration is better, equal to, or worse than dead. To validate these BTD preferences, MET preferences (whether a longer duration of a health state is better, equal, or worse than a shorter duration) were collected. RESULTS: BTD and MET preferences were strongly related (P < 0.001). For severe health states, although still judged as better than dead, BTD preferences curved downwards with increasing duration. Such curved BTD patterns occurred in 28% of the respondents, especially for more severe states (P < 0.001). CONCLUSIONS: BTD preferences revealed that the value of moderate and severe states declines with increasing duration, suggesting that health and duration interact. For states worse than dead versus states better than dead, traditional valuation techniques have the drawback that different preference questions are used. Using BTD preferences, however, a single simple preference question can assess states better than dead, as well as states worse than dead.

Individual differences in the use of the response scale determine valuations of hypothetical health states: An empirical study (Article)

2007-05-23T00:00:00Z

Background. The effects of socio-demographic characteristics of the respondent, including age, on valuation scores of hypothetical health states remain inconclusive. Therefore, we analyzed data from a study designed to discriminate between the effects of respondents' age and time preference on valuations of health states to gain insight in the contribution of individual response patterns to the variance in valuation scores. Methods. A total of 212 respondents from three age groups valued the same six hypothetical health states using three different methods: a Visual Analogue Scale (VAS) and two variants of the Time trade-off (TTO). Analyses included a generalizability study, principal components analysis, and cluster analysis. Results. Valuation scores differed significantly, but not systematically, between valuation methods. A total of 36.8% of variance was explained by health states, 1.6% by the elicitation method, and 0.2% by age group. Individual differences in the use of the response scales (e.g. a tendency to give either high or low TTO scores, or a high or low scoring tendency on the VAS) were the main source of remaining variance. These response patterns were not related to age or other identifiable respondent characteristics. Conclusion. Individual response patterns in this study were more important determinants of TTO or VAS valuations of health states than age or other respondent characteristics measured. Further valuation research should focus on explaining individual response patterns as a possible key to understanding the determinants of health state valuations.

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

2007-05-01T00:00:00Z

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

Coping strategies as determinants of quality of life in stroke patients: A longitudinal study (Article)

2007-05-01T00:00:00Z

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

Should health care professionals encourage living kidney donation? (Article)

2007-03-01T00:00:00Z

Living kidney donation provides a promising opportunity in situations where the scarcity of cadaveric kidneys is widely acknowledged. While many patients and their relatives are willing to accept its benefits, others are concerned about living kidney programs; they appear to feel pressured into accepting living kidney transplantations as the only proper option for them. As we studied the attitudes and views of patients and their relatives, we considered just how actively health care professionals should encourage living donation. We argue that active interference in peoples' personal lives is justified - if not obligatory. First, we address the ambiguous ideals of non-directivity and value neutrality in counselling. We describe the main pitfalls implied in these concepts, and conclude that these concepts cannot account for the complex reality of living donation and transplantation. We depict what is required instead as truthful information and context-relative counselling. We then consider professional interference into personal belief systems. We argue that individual convictions are not necessarily strong, stable, or deep. They may be flawed in many ways. In order to justify interference in peoples' personal lives, it is crucial to understand the structure of these convictions. Evidence suggests that both patients and their relatives have attitudes towards living kidney donation that are often open to change and, accordingly, can be influenced. We show how ethical theories can account for this reality and can help us to discern between justified and unjustified interference. We refer to Stephen Toulmin's model of the structure of logical argument, the Rawlsian model of reflective equilibrium, and Thomas Nagel's representation of the particularistic position.

Measuring the Core Components of Maladaptive Personality: Severity Indices of Personality Problems (SIPP-118) (Research Paper)

2007-01-01T00:00:00Z

This report describes a series of studies among 2231 subjects on the development of the Severity Indices for Personality Problems (SIPP), a self-report questionnaire measuring the core components of (mal)adaptive personality functioning. Results show that the 16 facets have good psychometric properties and test-retest reliability, are generic across various types of personality disorders, and have good discriminative validity between various populations. The facets fit well into a common factor model with five higher-order domains (i.e., self-control, identity integration, responsibility, relational capacities, and social concordance) that are eminently interpretable, and replicable across various populations. Domain scores are strongly associated with interview ratings of the severity of personality pathology. Taken together, the SIPP-118 provides a set of five reliable, robust and valid indices of personality problems.

Living Kidney Donation: Psychological and Ethical Aspects (Internal Report)

2006-08-01T00:00:00Z

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.

De Behoefte aan Psychosociale Steun bij Deelnemers aan het Nederlandse Cross-over Transplantatie Programma (Research Paper)

2006-06-01T00:00:00Z

Final technical report of the project.

Mens (dood of levend) of dier? Attitudes over en morele implicaties van orgaanverwerving (Research Paper)

2004-08-02T00:00:00Z

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.

Short term and long term health related quality of life after congenital anorectal malformations and congenital diaphragmatic hernia (Article)

2004-01-01T00:00:00Z

AIMS: To examine short term and long term health related quality of life (HRQoL) of survivors of congenital anorectal malformations (ARM) and congenital diaphragmatic hernia (CDH), and to compare these patients' HRQoL with that of the general population. METHODS: HRQoL was measured in 286 ARM patients and 111 CDH patients. All patients were administered a symptom checklist and a generic HRQoL measure. For the youngest children (aged 1-4) the TAIQOL (a preliminary version of the TAPQOL) was used, for the other children (aged 5-15) the TACQOL questionnaire, and for adults (aged >16) the SF-36. RESULTS: As appeared from the symptom checklists, many patients remained symptomatic into adulthood. In the youngest ARM patients (aged 1-4 years), generic HRQoL was severely affected, but the older ARM patients showed better HRQoL. In the CDH patients, the influence of symptoms on HRQoL seemed less profound. The instruments we used revealed little difference between adults treated for ARM or CDH and the general population. CONCLUSIONS: These results show that for two neonatal surgical procedures, improved survival does not come at the expense of poor HRQoL in adults. Even though there is considerable suffering in terms of both morbidity and mortality in the youngest group, the ultimate prognosis of survivors of the two studied congenital malformations is favourable. This finding can be used to reassure parents of patients in need of neonatal surgery for one of these conditions about the prospects for their child.

Radiotherapie versus CO2-laserbehandeling voor de behandeling van het T1a glottisch larynxcarcinoom (Research Paper)

2002-01-01T00:00:00Z

In dit onderzoek werden de kosten en effecten van de meest voorkomende behandelingen voor het T1a larynxcarcinoom, radiotherapie en de CO2-laserbehandeling, met elkaar vergeleken. De kostenberekening werd gebaseerd op een inventarisatie van de totale medische consumptie tussen eerste bezoek en 2 jaar na de behandeling van patiënten die tussen 1995 en 1999 in het Vumc (Vrije Universiteit medisch centrum te Amsterdam) werden behandeld. Klinische effectiviteitmaten (locale controle, ziektespecifieke sterfte en larynxpreservatie), subjectieve stemkwaliteit (Voice Handicap Index) en de algemene gezondheidsgerelateerde kwaliteit van leven (COOP/Wonca kaarten) werden onderzocht. Gemiddeld bedroegen de totale kosten van de diagnose tot en met twee jaar na de behandeling met radiotherapie Euro 7253,-. Dit bedrag beslaat ook de kosten van de behandeling van een eventueel recidief of een goedaardige afwijking, wanneer deze zich binnen de beschouwde periode manifesteerde. Voor CO2-laserbehandeling bedroegen de kosten Euro 3865,-. Er waren geen verschillen op de klinische effecten. De algemene gezondheidsgerelateerde kwaliteit van leven toonde eveneens geen significante verschillen tussen de beide behandelmethoden. Met betrekking tot de stemkwaliteit werd een significant verschil gevonden tussen de beide groepen op de E-schaal (Emotional). Patiënten behandeld met de CO2-laser scoorden hierop significant beter dan radiotherapiepatiënten. Bovendien scoorden deze patiënten beter op één van de twee toegevoegde stellingen over last bij het slikken. Op de totaalscore van de VHI bestond echter geen verschil tussen de patiëntengroepen. Voor de betreffende patiënten is de radiotherapiebehandeling significant duurder dan CO2-laserbehandeling. Op basis van de gelijke effectiviteit en de kostenberekening van de beide behandelmethoden kan worden gesteld dat de behandeling met de CO2-laser een doelmatig alternatief is voor de behandeling met radiotherapie voor het T1a larynxcarcinoom.

Costs of Alzheimer's disease (in Dutch); A study of the most important cost items of patients with Alzheimer's disease in the Netherlands and in France (Research Paper)

2001-01-01T00:00:00Z

The most frequently occurring type of dementia is Alzheimer's disease. Alzheimer's disease is a degenerative illness affecting the brain, decreasing the patient's memory and judgement. A cure is not available but it is possible to delay the cognitive decline with medication. New drugs like Aricept and Metrifonate appear to have no or minor side effects and have a positive effect on the cognitive functions and behavior of the patient. At this moment the iMTA is studying the cost-effectiveness of Metrifonate. This thesis is part of that study and focuses on the costs of Alzheimer's disease. The main question formulated in this thesis was: How do the costs of institutionalization compare with the costs of living at home for patients with Alzheimer's disease in The Netherlands and France? For The Netherlands earlier studies on the use of health care services by demented patients were used to estimate the costs for demented patients living at home. These costs depend on the amount of formal and informal health care services that demented patients use. The valuation of informal care also determines the amount of costs for patients living at home. The costs of living at home were compared with the costs of institutionalization. The costs of demented patients living at home are lower than the costs of institutionalization when informal care is not valued. When the costs of informal care are included in the costs for patients living at home, these costs exceed the costs of institutionalization for mildly demented patients as well as for severely demented patients by seven or more hours of informal care per day. A mildly demented patient probably does not need this amount of informal care per day. A severely demented patient could need seven hours of informal care per day. In that case costs of institutionalization are lower than the costs of living at home. In France admission of a mildly demented patient is cheaper when the patient needs more than two hours of informal care per day. As the severity of dementia increases, the increase in costs of institutionalization is not equal to the increase in costs of living at home. Therefore the thresholds at which the costs of living at home exceed the costs for institutionalization for a mildly demented patient does not equal the threshold for a severely demented patient. In comparison with The Netherlands, the costs for demented patients living at home in France are lower than in the Netherlands. This is caused by the increased use of informal care and the decreased use of professional health care services in France compared with the Netherlands. The costs of institutionalization are also higher in the Netherlands than in France. The costs of the French institutions are lower than the costs of institutions in the Netherlands because the emphasis is more on the function of living than on the function of caring. When informal care is valued with the same tariff used in the Netherlands, admission of a severely demented patient needing more than seven hours of informal care per day is cheaper than living at home. This last mentioned threshold is comparable with the Netherlands.

Quality of life and costs of Filgrastim® (G-CSF) treatment in patients with persistent chronic rhinosinusitis (Research Paper)

2000-01-01T00:00:00Z

This is the first report of the double blind randomized clinical trial, in which we investigated the influence of Filgrastim(r) on the quality of life and treatment costs of chronic sinusitis patients who did not respond to regular treatments. The quality of life of 56 patients was assessed 5 times during the 24-week trial with the EuroQol, the SF-36 and the McGill Pain questionnaire. We further controlled for "responsiveness", based on clinical impression. Direct medical and indirect non-medical costs per patient during the trial were analyzed, based on data from clinical record forms and the hospital information system. We further compared the direct medical costs to the costs of regular treatment. The quality of life scores were all below population norm scores. Quality of life scores of the Filgrastim(r) group suggested a better quality of life than the placebo group, although none of the differences were statistically significant. There were indications that controlling for responsiveness increased the power of the design. The difference in costs between the trial groups were driven by the Filgrastim(r) costs (Euro 4899). When Filgrastim(r) costs were neglected, no difference in costs remained. Except for Filgrastim(r), total direct costs summed up to Euro 2712 and the indirect costs to Euro 582. Total direct costs of a 24-week regular treatment were three times lower than the costs of the trial treatment. While significantly increasing treatment costs, Filgrastim(r) administration does not lead to a better quality of life of chronic sinusitis patients, although there were some indications that it might be possible to determine a subpopulation in which the results are better.

Cost utility analysis of sildenafil compared with papaverine-phentolamine injections (Article)

2000-01-01T00:00:00Z

OBJECTIVE: To compare the cost effectiveness of sildenafil and papaverine-phentolamine injections for treating erectile dysfunction. DESIGN: Cost utility analysis comparing treatment with sildenafil (allowing a switch to injection therapy) and treatment with papaverine-phentolamine (no switch allowed). Costs and effects were estimated from the societal perspective. Using time trade-off, a sample of the general public (n=169) valued health states relating to erectile dysfunction. These values were used to estimated health related quality of life by converting the clinical outcomes of a trial into quality adjusted life years (QALYs). PARTICIPANTS: 169 residents of Rotterdam. MAIN OUTCOME MEASURES: Cost per quality adjusted life year. RESULTS: Participants thought that erectile dysfunction limits quality of life considerably: the mean utility gain attributable to sildenafil is 0.11. Overall, treatment with sildenafil gained more QALYs, but the total costs were higher. The incremental cost effectiveness ratio for the introduction of sildenafil was pound sterling 3639 in the first year and fell in following years. Doubling the frequency of use of sildenafil almost doubled the cost per additional QALY. CONCLUSIONS: Treatment with sildenafil is cost effective. When considering funding sildenafil, healthcare systems should take into account that the frequency of use affects cost effectiveness.

The cost-utility of Viagra® in The Netherlands (Research Paper)

1999-01-01T00:00:00Z

OBJECTIVE: Clinical trials suggest that sildenafil is an effective treatment for erectile dysfunction. Nevertheless, reimbursement is controversial: sildenafil is expected to be more effective than conservative therapy (papaverine/ phentolamine injections), but also more costly to society. Economic appraisal of sildenafil is of interest given the prevalence of the disorder. DESIGN: We analyzed the cost-effectiveness of a sildenafil scenario (allowing a switch to injection therapy) and the papaverine/ phentolamine scenario (conservative therapy, no switch allowed). Analyses were performed from the societal perspective. Values for health states of erectile dysfunction were collected using time trade-off. Using these values (N=169), we converted trial outcomes (Goldstein, 1998) into quality adjusted life years (QALYs). RESULTS: The mean utility gain attributable to sildenafil is 0.11. In the sildenafil scenario, more QALYs are gained but the total costs are higher. The incremental cost-effectiveness ratio of sildenafil is $6037 (£3639) in the 1st year, improving in following years. CONCLUSIONS: This cost-utility analysis suggests that the clinical effect of sildenafil are derived at reasonable costs. When considering reimbursement of sildenafil, it should be taken into account that the frequency of use affects this cost-effectiveness ratio.