Background Based on subjective experience, patients can identify research priorities important for health services research. A systematic method for priority setting has been developed by the James Lind Alliance. Objective This article reviews the literature on the research priorities of patients, caregivers and health‐care professionals and presents the prioritized research themes and prioritization methods used. Search strategy Three electronic databases were searched on 22 May 2018. The search was not limited to any time period or language. Inclusion criteria The included studies reported the identification and prioritization of research priorities involving patients, relatives and caregivers. Each included paper addressed a specific ICD‐coded health problem, and at least one‐third of the sample involved in the prioritization process was affected by the health problem. Data extraction and synthesis The 10 top‐ranked research priorities were included in the thematic analysis. With an inductive approach, a system of identified themes and subthemes was developed from the research priorities. Each research priority was assigned to one research theme. Main results The priority lists of 34 publications involving 331 research priorities were included. Nine main themes represent the content of the research priorities. The most frequently represented main themes are ‘Treatment’, ‘Patients’ and ‘Health condition’. The distribution of the research priorities varied depending on the health conditions and prioritization methods. Discussion and conclusions This review provides a comprehensive overview of the overarching research themes in research priorities of affected individuals. The results can guide future patient‐oriented research.

Aims Left ventricular assist devices (LVADs) are increasingly being used in the treatment of advanced heart failure. Left ventricular assist device patients frequently report improvements in health-related quality of life (HRQOL) post-implantation. However, HRQOL varies over time and between patients, which can be explained by patient-related and environmental factors, as individual studies suggest. This review aims to synthesize qualitative evidence on factors influencing HRQOL of LVAD patients. Methods and results We systematically searched the databases PubMed, Scopus, PsycINFO, and CINAHL for qualitative studies on factors influencing HRQOL of patients with continuous flow LVADs. The included papers were synthesized using a thematic synthesis. The results were validated in discussion with a patient and practical implications were jointly developed. We included 11 papers and developed 7 themes that represent influencing factors for HRQOL of LVAD patients: disease experiences, emotional reactivity, heart failure and mechanical circulatory support symptoms, medical care, self-care, self-concept, and social environment. Conclusion The identified themes highlight influencing factors on HRQOL. These help to explain variation in patient outcomes and to better consider the individual situation in rehabilitation. Based on the results, four strategies are proposed for promoting psychosocial outcomes: facilitate self-care, ensure social support, offer psychosocial support, and manage patient expectations.

IntroductionDue to technological progress and persistent shortage of donor hearts, left ventricular assist devices (LVADs) have become established in the treatment of advanced heart failure. Accordingly, more patients live with LVADs for prolonged periods. Related research focused primarily on clinical issues and little is known about psychosocial aspects of living with an LVAD. This study aims to explore psychological burden and coping following LVAD implantation.Methods and analysisAn exploratory qualitative study with cross-sectional and longitudinal elements will be carried out. At least 18 patients with LVAD who have the device implanted from a few weeks to more than 3 years will be interviewed in the cross-sectional component using an interview guide. A subsample of patients who live with the LVAD for up to 3 months when recruited will be interviewed two additional times in the following year. The cross-sectional interviews will be analysed using an inductive qualitative content analysis to describe psychological burden, coping resources and behaviour from the patient’s perspective. Based on the findings, the longitudinal interviews will be analysed with a deductive content analysis to explore psychological adjustment during the first year after implantation. The findings will provide a deeper understanding of the complex and specific situation of patients with LVAD and of psychological adjustment to living with a life-sustaining implant. This can help clinicians in considering individual aspects to promote patient outcomes and is the basis for further research on healthcare interventions or technical solutions to reduce burden and for developing rehabilitation measures to promote psychosocial outcomes.Ethics and disseminationEthical approval was obtained from the ethics committee of the School of Medicine and Health Sciences at the University of Oldenburg (2019-023). Study findings will be disseminated at national and international conferences and through peer-reviewed journals.Trial registration numberGerman Clinical Trials Register (DRKS00016883).

Background Due to an increasing prevalence of heart failure and persistent shortage of donor hearts, the number of left ventricular assist device (LVAD) implantations is growing. As more patients live with LVADs for prolonged periods of time, psychosocial outcomes are becoming more relevant. This particularly applies to destination therapy (DT) patients, who live with the LVAD for the rest of their lives. Methods We used a cross‐sectional qualitative design to explore psychological burden, coping strategies, and resources from the perspective of DT patients. Data were collected via semi‐structured in‐depth interviews with 18 patients who lived with the LVAD for 3 months to over 10 years. These were analyzed using an inductive content analysis. Due to the COVID‐19 pandemic, changes to the recruitment strategy and data collection strategies of the original study protocol were applied. Patients and clinicians were involved throughout the research process to ensure the validity of the results and implications. Results We synthesized 10 psychosocial, health, and treatment‐related burdens and identified 15 problem‐ and emotion‐focused coping strategies and 5 personal and environmental resources patients used to cope with the burden. Conclusions The findings provide deeper insights into the complex and specific situation of LVAD patients to better address the patient situation in health care and promote positive psychosocial outcomes. So far, health care practice and quality vary significantly between clinics due to individual treatment protocols. Our results highlight the need to improve medical and psychosocial care. Overarching care concepts may be developed based on the implications.

Zusammenfassung Ziel der Arbeit Menschen mit Paraplegie, Angehörige und professionell Versorgende können mit ihrer Erfahrung und praktischen Kenntnissen zur Entwicklung patientenorientierter, versorgungsrelevanter Forschungsfragen beitragen. Um sie in die Entwicklung einer Forschungsagenda einzubeziehen, hat die James Lind Alliance (JLA) einen etablierten Ansatz entwickelt. Das Ziel dieser Studie ist die Entwicklung einer Forschungsagenda zu Paraplegie infolge einer traumatischen Querschnittlähmung, in Anlehnung an diesen Ansatz. Methodik Es wurden vier aufeinander aufbauende Online-Befragungen unter Menschen mit einer traumatisch bedingten Paraplegie, ihren Angehörigen und professionell Versorgenden durchgeführt. In der ersten haben die Teilnehmenden aus ihrer Sicht unbeantwortete Fragen frei formuliert. Diese wurden zusammengefasst und dahingehend geprüft, ob sie bereits durch Forschung beantwortbar sind. Die unbeantworteten Fragen wurden in weiteren Befragungen schrittweise priorisiert: In der zweiten wurden sie auf einer fünfstufigen Rating-Skala (1–5) hinsichtlich ihrer Relevanz bewertet, um eine Shortlist aus den Fragen zu entwickeln, die mit einem Mittelwert von über 4 bewertet wurden. In der dritten Umfrage wurden daraus die Top 10 bestimmt, deren Rangordnung in der vierten Befragung ermittelt wurde. Ergebnisse Es wurden 38 unbeantwortete Forschungsfragen identifiziert (1. Befragung; n=52). Davon wurden 26 Fragen als wichtig bewertet (2. Befragung; n=53), aus denen 10 Fragen ausgewählt (3. Befragung; n=17) und in eine Rangordnung gebracht wurden (4. Befragung; n=12). Vier Prioritäten betreffen Behandlungsmöglichkeiten der Querschnittlähmung oder damit verbundener Gesundheitsprobleme, drei die Gestaltung der Gesundheitsversorgung im Bereich der Hilfsmittel und der Implementierung von Forschung, zwei adressieren Patientenfaktoren, die zur Verbesserung der eigenen Situation beitragen und eine die Erforschung des Krankheitsverlaufs. Schlussfolgerung Es wurden neun Fragestellungen priorisiert, die auf Forschung zur Verbesserung der Lebens- und Versorgungssituation mit einer Querschnittlähmung abzielen, während eine Frage die Heilung adressiert. Die priorisierten Fragen sollten durch Forschung aufgegriffen werden, damit Problemstellungen adressiert werden, die für Betroffene, Angehörige und professionell Versorgende relevant sind.