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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.