Search

Objectives: This study explored the decision-making experiences of patients and their partners or primary caregiver who opted for experimental active surveillance (instead of standard surgery) for the treatment of esophageal cancer. Methods: Seventeen couples participated. Semi-structured interviews were conducted on couples’ joint experiences as well as their individual experiences. Preferred and perceived role in the treatment decision-making process was assessed using the adjusted version of the Control Preferences Scale, and perceived influence on the treatment decision was measured using a visual analog scale. Results: Couples reflected on the decision-making process as a positive collaboration, where patients retain their autonomy by making the final decision, and partners offer emotional support. Couples reported about an overwhelming amount and sometimes conflicting information about treatments among different hospitals and healthcare providers. Conclusions: Patients often involve their partner in decision-making, which they report to have enhanced their ability to cope with the disease. The amount and sometimes conflicting information during the decision-making process provide opportunities for improvement. Practice implications: Couples can benefit from an overview of what they can expect during treatment course. If active surveillance becomes an established treatment option in the future, provision of such overviews and consistent information should become more streamlined.

Objectives: Cross-attribute level effects (CALE) model has demonstrated better predictive accuracy for out-of-sample health states than the conventional additive main-effects model in cross-validation analysis of the 5-level version of EQ-5D (EQ5D-5L) composite time trade-off (cTTO) datasets. In this study, we aimed to further test the performance of CALE model using a different design and modified EQ-5D-5L states. Methods: A total of 29 EQ-5D-5L self-care bolt-off states, 30 EQ-5D-5L states, and 31 EQ-5D-5L vision bolt-on states were selected from the same orthogonal array. A total of 600 university students were interviewed face-to-face to value a subset of these health states using the cTTO method. For each type of health state, we fitted both the conventional maineffects model and the CALE model. Predictive accuracy was assessed in a series of cross-validation analysis using the leave-one-state-out method. Results: Overall, the CALE model outperformed the conventional model for each of the 3 types of health states in predicting the cTTO values of out-of-sample health states. The prediction accuracy of using the CALE model improved with the number of dimensions in health states, for example, the MAE decreased about 24%, 67%, and 77% for the EQ-5D-5L self-care bolt-off, EQ-5D-5L, and EQ-5D-5L vision bolt-on states, respectively, when using CALE models. Conclusion: Our study supported the strengths of the CALE model for modelling the utility values of both original and modified EQ-5D-5L health states. Investigators with limited resources may consider using the CALE model to lower the costs for their valuation studies for EQ-5D-5L or similar health state descriptive systems.

This chapter introduces the EQ-5D-5L questionnaire and its development by the EuroQol Group. The availability of the EQ-5D-5L, and the growing evidence of its pivotal role as a measurement system, generated a demand for ‘values’ to accompany it that would enable the use of EQ-5D-5L data in the estimation of quality-adjusted life-years (QALYs) and other applications where EQ-5D-5L profle data needs to be summarised by a single number. Chapter 1 sets out the main aim of the book: to provide an accessible source of information and guidance to support users of EQ-5D-5L and its value sets. Specifcally, the book aims to improve users’ understanding of how EQ-5D-5L value sets are generated using the internationally standardised EQ-VT protocol; to raise awareness of the characteristics and properties of value sets; and to inform users’ choice of which value set to select for which purpose, and how that choice may affect analysis. The chapter concludes with an overview of the content of the book.

Purpose: Clear information and supportive care are necessary for patients with cancer to effectively manage their condition. Traditionally, healthcare professionals offer information and support via the so-called formal care route. In addition, research has found favorable effects of informal care provided by volunteer programs and informal “walk-in support centers.” Less research has been done on initiatives that combine formal and complementary informal supportive care for patients with cancer. This systematic literature study aimed to discover (1) which types of initiatives are described in the literature, (2) what type of care they offer, and (3). how they are evaluated in terms of outcome measures. Methods: We performed a systematic literature search of MEDLINE, Embase, PsycINFO, and CINAHL. Studies were included if the collaboration between one type of formal care together with one type of informal care was explicitly mentioned in the article. The search was not restricted to a specific cancer type. Results: A total of 4869 records were retrieved and 18 studies were included. In most studies, the care provided consisted of emotional support for, and/or providing information to, patients and their families. Initiatives were evaluated with interviews and questionnaires. Patients with cancer reported that they were satisfied with the care offered, including information, social and emotional support, help with activities of daily living, and family-related issues. Volunteers reported that visits they made were experienced positive and rewarding and the volunteers were confident about their contribution to general healthcare. Some negative experiences were reported by volunteers, e.g., interference of their own cancer diagnosis with volunteer work. The importance of proper training was stressed. Conclusions: Initiatives combining formal and informal supportive care hold the potential of added value in terms of providing emotional support for, and providing infor

Purpose: The purpose of the article is to present standard set of outcomes for people with personality disorder (PD), in order to facilitate patient outcome measurement worldwide. Methods: The International Consortium for Health Outcomes Measurement (ICHOM) gathered a multidisciplinary international working group, consisting of 16 experts, including clinicians, nurses, psychologists, methodologists and patient representatives, to develop a standard set of outcome measures for people with PD. The Delphi method was used to reach consensus on the scope of the set, outcome domains, outcome measures, case-mix variables and time points for measuring outcomes in service users. For each phase, a project team prepared materials based on systematic literature reviews and consultations with experts. Results: The working group decided to include PD, as defined by International Classification of Diseases 11th revision (ICD-11). Eleven core outcomes and three optional outcomes across four health domains (mental health, behaviour, functioning and recovery) were defined as those relevant for people with PD. Validated measures for the selected outcomes were selected, some covering more than one outcome. Case-mix variables were aligned to other ICHOM mental health standard sets and consisted of demographic factors and those related to the treatment that people received. The group recommended that most outcomes are measured at baseline and annually. Conclusion: The international minimum standard set of outcomes has the potential to improve clinical decision making through systematic measurement and comparability. This will be key in improving the standard of health care for people with PD across the world.

Research has shown that a home-based educational intervention for patients with chronic kidney disease results in better knowledge and communication, and more living donor kidney transplantations (LDKT). Implementation research in the field of renal care is almost nonexistent. The aims of this study were (1) to demonstrate generalizability, (2) evaluate the implementation process, and (3) to assess the relationship of intervention effects on LDKT-activity. Eight hospitals participated in the project. Patients eligible for all kidney replacement therapies (KRT) were invited to participate. Effect outcomes were KRT-knowledge and KRT-communication, and treatment choice. Feasibility, fidelity, and intervention costs were assessed as part of the process evaluation. Three hundred and thirty-two patients completed the intervention. There was a significant increase in KRT-knowledge and KRT-communication among participants. One hundred and twenty-nine out of 332 patients (39%) had LDKT-activity, which was in line with the results of the clinical trials. Protocol adherence, knowledge, and age were correlated with LDKT-activity. This unique implementation study shows that the results in practice are comparable to the previous trials, and show that the intervention can be implemented, while maintaining quality. Results from the project resulted in the uptake of the intervention in standard care. We urge other countries to investigate the uptake of the intervention.

Multisystemic Therapy (MST) and Functional Family Therapy (FFT) have overlapping target populations and treatment goals. In this study, these interventions were compared on their effectiveness using a quasi-experimental design. Between October, 2009 and June, 2014, outcome data were collected from 697 adolescents (mean age 15.3 (SD 1.48), 61.9% male) assigned to either MST or FFT (422 MST; 275 FFT). Data were gathered during Routine Outcome Monitoring. The primary outcome was externalizing problem behavior (Child Behavior Checklist and Youth Self Report). Secondary outcomes were the proportion of adolescents living at home, engaged in school or work, and who lacked police contact during treatment. Because of the nonrandom assignment, a propensity score method was used to control for observed pre-treatment differences. Because the riskneed-responsivity (RNR) model guided treatment assignment, effectiveness was also estimated in youth with and without a court order as an indicator of their risk level. Looking at the whole sample, no difference in effect was found with regard to externalizing problems. For adolescents without a court order, effects on externalizing problems were larger after MST. Because many more adolescents with a court order were assigned to MST compared to FFT, the propensity score method could not balance the treatment groups in this subsample. In conclusion, few differences between MST and FFT were found. In line with the RNR model, higher risk adolescents were assigned to the more intensive treatment, namely MST. In the group with lower risk adolescents, this more intensive treatment was more effective in reducing externalizing problems.

Objective One of the spearheads of psychiatric healthcare in the Netherlands is hospital care for patients with a psychiatric comorbidity. In 2014, the Netherlands Psychiatric Association published ten field standards for Medical Psychiatric Units (MPUs). We catalogued healthcare in the Netherlands on the basis of these field standards. Design Telephone screening, followed by a questionnaire investigation. Method In the period MayAugust 2015, psychiatrists in 90 hospitals in the Netherlands were approached by telephone with 4 screening questions. If the department complied with the screening criteria for an MPU, a structured interview comprising 51 questions followed. The interview script was tested against the field standards using the Delphi method. Results The screening identified 40 potential MPUs; 37 (92.5%) wards participated in the complete interview. MPU care is unevenly distributed across the country. None of the MPUs complied with all field standards, even if the score on subcriteria concerning care content was relatively good. The main shortcomings were: lack of care facilities (predominantly somatic care facilities); no availability of continuous somatic nursing expertise; insufficient knowledge among somatic medical specialists of psychiatric care needs and lack of care chain arrangements. Conclusion MPUs are unevenly distributed across the country; care content is adequate, but education, tighter multidisciplinary cooperation and availability of somatic nursing expertise on every shift could improve care on MPUs. The departments should also pay more attention to care chain arrangements. The field standards are too stringent; these could be improved by defining 'essential care' and application of differentiated assessment of subcriteria.

Background: Mentalization-Based Treatment (MBT) is a promising, though expensive treatment for severely ill patients with Borderline Personality Disorder (BPD). A high burden of disease in terms of quality of life (QoL) and life years lost can be a reason to prioritize mental health interventions, and specifically for BPD patients. Moreover, when the societal costs of the illness are high, spending resources on high treatment costs would be more easily legitimized. Therefore, the purpose of this study was to calculate the burden of disease of BPD patients eligible for MBT. Methods: The 403 patients included in this study were recruited from two mental health care institutes in the Netherlands. All patients were eligible for MBT. Burden of disease consisted of QoL, measured with the EuroQol EQ-5D-3L, and costs, calculated using the Trimbos and Institute for Medical Technology Assessment Questionnaire for Costs Associated with Psychiatric Illness. Results: The mean QoL index score was .48. The mean total costs in the year prior to treatment were €16,879 per patient, of which 21 % consisted of productivity costs. Conclusions: The burden of disease in BPD patients eligible for MBT is high, which makes it more likely that society is willing to invest in treatment for these patients. However, this finding should not be interpreted as a license to unlimitedly use resources to reimburse treatment for severe BPD patients, as these findings do not provide any information on the effectiveness of MBT or other available treatment programs for BPD. The effectiveness of available treatments should be evident by studies on the effectiveness of the treatment itself and by comparing the effectiveness of these treatments to treatment as usual and to other treatment options for BPD patients. Trial registration: The data on this paper came from two tr

Background In order to make a well-considered decision and give informed consent about renal replacement therapy, potential living kidney donors and recipients should have sufficient understanding of the options and risks. Purpose We aimed to explore knowledge about Dialysis & Transplantation (DT) and Living Donation (LD) among prospective living kidney donors and recipients. Eighty-five donors and 81 recipients completed the Rotterdam Renal Replacement Knowledge-Test (R3K-T) 1 day before surgery. The questionnaire was available in various languages. Recipients knew significantly more about DT than donors (p < 0.001); donors knew more about LD than recipients (p < 0.001). A minority of donors (15 %) and recipients (17 %) had a score that was comparable to the knowledge level of the na < ve general population. Recipients and donors knew less about DT and LD if their native language was not Dutch. In addition, recipients knew less about DT if they were undergoing pre-emptive transplantation. We conclude that recipients and donors retain different information. The decision to undergo living donation appears to be not always based on full knowledge of the risks. We recommend that professionals assess knowledge of prospective donors and recipients during the education process using the R3K-T, and extra attention is required for non-native speakers.

Introduction: Non-adherence to disease-modifying antirheumatic drugs (DMARDs) hampers the targets of rheumatoid arthritis (RA) treatment, obtaining low disease activity and decreasing radiological progression. This study investigates if, and to what extent, non-adherence to treatment would lead to a higher 28-joint count disease activity score (DAS28) in the first year after diagnosis. Methods: Adult patients from an ongoing cohort study on treatment adherence were selected if they fulfilled the EULAR/ACR2010 criteria for RA, and were to start with their first DMARDs. Clinical variables were assessed at baseline and every 3 months. Non-adherence was continuously electronically measured and was defined as the proportion of days with a negative difference between expected and observed openings of the medication container out of the 3-month period before DAS28 measurement. Generalized linear mixed models were used to investigate whether the DAS28 related to non-adherence. Covariates included were age, sex, baseline DAS28, rheumatoid factor positivity, anti-cyclic citrullinated peptide antibodies (ACPA) positivity, anxiety, depression, weeks of treatment, number of DMARDs used, education level, use of subcutaneous methotrexate and biological use. Results: One hundred and twenty patients met the inclusion criteria for RA. During the study period 17 patients became lost to follow-up. There was a decline in adherence over time for all DMARDs except for prednisone. Non-adherence is a predictor of disease activity in the first 6 months of therapy, adjusted for weeks of treatment, baseline DAS28, and baseline anxiety. Conclusions: Non-adherence relates to disease activity. Therefore, interventions towards enhancing adherence can improve disease outcome.

Objectives To investigate whether a value of information analysis, commonly applied in health care evaluations, is feasible and meaningful in the field of crime prevention. Methods Interventions aimed at reducing juvenile delinquency are increasingly being evaluated according to their cost-effectiveness. Results of cost-effectiveness models are subject to uncertainty in their cost and effect estimates. Further research can reduce that parameter uncertainty. The value of such further research can be estimated using a value of information analysis, as illustrated in the current study. We built upon an earlier published cost-effectiveness model that demonstrated the comparison of two interventions aimed at reducing juvenile delinquency. Outcomes were presented as costs per criminal activity free year. Results At a societal willingness-to-pay of (sic)71,700 per criminal activity free year, further research to eliminate parameter uncertainty was valued at (sic)176 million. Therefore, in this illustrative analysis, the value of information analysis determined that society should be willing to spend a maximum of (sic)176 million in reducing decision uncertainty in the cost-effectiveness of the two interventions. Moreover, the results suggest that reducing uncertainty in some specific model parameters might be more valuable than in others. Conclusions Using a value of information framework to assess the value of conducting further research in the field of crime prevention proved to be feasible. The results were meaningful and can be interpreted according to health care evaluation studies. This analysis can be helpful in justifying additional research funds to further inform the reimbursement decision in regard to interventions for juvenile delinquents.

Background Mindfulness-based therapies are being used in a wide range of common chronic conditions in both treatment and prevention despite lack of consensus about their effectiveness in different patient categories. Objective To systematically review the evidence of effectiveness MBSR and MBCT in different patient categories. Methods A systematic review and meta-analysis of systematic reviews of RCTs, using the standardized MBSR or MBCT programs. We used PRISMA guidelines to assess the quality of the included reviews and performed a random effects meta-analysis with main outcome measure Cohen's d. All types of participants were considered. Results The search produced 187 reviews: 23 were included, covering 115 unique RCTs and 8,683 unique individuals with various conditions. Compared to wait list control and compared to treatment as usual, MBSR and MBCT significantly improved depressive symptoms (d= 0.37; 95% CI 0.28 to 0.45, based on 5 reviews, N = 2814), anxiety (d = 0.49; 95% CI 0.37 to 0.61, based on 4 reviews, N = 2525), stress (d = 0.51; 95% CI 0.36 to 0.67, based on 2 reviews, N = 1570), quality of life (d = 0.39; 95% CI 0.08 to 0.70, based on 2 reviews, N = 511) and physical functioning (d = 0.27; 95% CI 0.12 to 0.42, based on 3 reviews, N = 1015). Limitations include heterogeneity within patient categories, risk of publication bias and limited long-term follow-up in several studies. Conclusion The evidence supports the use of MBSR and MBCT to alleviate symptoms, both mental and physical, in the adjunct treatment of cancer, cardiovascular disease, chronic pain, depression, anxiety disorders and in prevention in healthy adults and children.

Evaluating a person's suitability for living organ donation is crucial, consisting not only of a medical but also of a thorough psychosocial screening. We performed a systematic literature review of guidelines, consensus statements, and protocols on the content and process of psychosocial screening of living kidney and liver donor candidates. We searched PubMed, Embase, CINAHL, and PsycINFO until June 22, 2011, following the PRISMA guidelines, complemented by scrutinizing guidelines databases and references of identified publications. Thirty-four publications were identified, including seven guidelines, six consensus statements, and 21 protocols or programs. Guidelines and consensus statements were inconsistent and lacked concreteness for both their content and process, possibly explaining the observed variability in center-specific evaluation protocols and programs. Overall, recommended screening criteria are not evidence-based and an operational definition of the concept "psychosocial" is missing, causing heterogeneity in terminology. Variation also exists on methods used to psychosocially evaluate potential donors. The scientific basis of predonation psychosocial evaluation needs to be strengthened. There is a need for high-quality prospective psychosocial outcome studies in living donors, a uniform terminology to label psychosocial screening criteria, and validated instruments to identify risk factors.

Introduction: For patients with a chronic disease, the appropriate use of medication is the key to manage their illness. Adherence to medication is therefore important. Adherence can be divided into three parts: the initiation part, the execution phase, and the discontinuation part. Little is known about the determinants of the initiation part. For this reason, we describe the conduct of a stepwise procedure to study determinants of medication initiation for patients with a chronic disease. Methods/design: The stepwise procedure comprises of eliciting a list of all potential determinants via literature review, interviewing patients, and consulting an expert panel. This is followed by embedding the determinants in a theoretical framework, developing a questionnaire, and choosing adherence measurement methods. The consecutive steps that we conducted for the development of a tool for the prediction of adherence in our study sample of early arthritis patients are described. Discussion: Although we used a thorough procedure, there are still some pitfalls to take into account, such as the choice of theoretical framework. A strength of this study is that we use multiple adherence measurement methods and that we also take clinical outcomes into account.

Background: To determine whether healthcare resources are allocated fairly, it is helpful to have information on the quality of life (QoL) of patients with Unexplained Physical Symptoms (UPS) and on the costs associated with them, and on how these relate to corresponding data in other patient groups. As studies to date have been limited to specific patient populations with UPS, the objective of this study was to assess QoL and costs in a general sample of patients with UPS using generic measures. Methods: In a cross-sectional study, 162 patients with UPS reported on their QoL, use of healthcare resources and lost productivity in paid and unpaid work. To assess QoL, the generic SF-36 questionnaire was used, from which multidimensional quality-of-life scores and a one-dimensional score (utility) using the SF-6D scorings algorithm were derived. To assess costs, the TiC-P questionnaire was used. Results: Patients with UPS reported a poor QoL. Their QoL was mostly decreased by limitations in functioning due to physical health, and the least by limitations in functioning due to emotional problems. The median of utilities was 0.57, and the mean was 0.58 (SD = .09). The cost for the use of healthcare services was estimated to be (sic)3,123 (SD = (sic)2,952) per patient per year. This cost was enlarged by work-related costs: absence from work (absenteeism), lower on-the-job productivity (pre Conclusions: These findings suggest that patients with UPS have a high burden of disease and use a considerable amount of healthcare resources. In comparison with other patient groups, the QoL values of patients with UPS were among the poorest and their costs were among the highest of all patient groups. The burden for both patients and society helps to justify the allocation of sufficient resources to effective treatment for patients with UPS.