[Healthcare quality and safety in left ventricular assist device therapy from the patient perspective: A qualitative study on relevant aspects of care]. / Versorgungsqualität und -sicherheit nach Implantation eines Linksherzunterstützungssystems: eine qualitative Studie zur Patient*innenperspektive auf relevante Versorgungsaspekte.

INTRODUCTION: Implantation of a left ventricular assist device (LVAD) requires extensive aftercare. It is largely unclear how aftercare should be designed from the patients' perspective. Implications can be developed based on an examination of the healthcare context. Its main components are mapped on five tiers in the Human Factors of Home Health Care Model by Henriksen, Joseph, and Zayas-Caban (2009). Using this model, the present study explores the patient perspective on the context of healthcare after an LVAD implantation. METHODS: We employed a qualitative cross-sectional study, in which LVAD patients participated in semi-structured interviews. The transcribed interviews were analyzed using content analysis. First, relevant meaning units were identified and deductively categorized into the model. Then, categories of care-related aspects were developed inductively within each of the model tiers. RESULTS: We interviewed 18 patients aged 33 to 78 years who had been living with the LVAD between a few weeks and more than 10 years. Twenty-eight categories related to care aspects were developed within the model tiers: 3 categories on patient characteristics (e.g., self-management skills), 3 on caregiver characteristics (e.g., professionalism), 11 healthcare-related tasks and requirements (e.g., wound management), 8 on factors of the physical environment (e.g., controllability), medical devices and technologies (e.g., carrying systems for external components), and cultural, social and community environment (e.g., interaction with peers), as well as 3 on external environmental factors (e.g., healthcare infrastructure). DISCUSSION: The present study represents the first investigation focusing on aspects of the healthcare context influencing healthcare quality and safety from the perspective of LVAD patients in Germany. LVAD aftercare covers a broad and complex range of tasks. For this, patients, caregivers and healthcare professionals need specific knowledge, which is lacking in various respects. In the first place, this is compensated by the patients' own initiative and the personal care provided by the VAD outpatient clinics. CONCLUSION: Three key recommendations to optimize aftercare from the patient perspective are derived: Patients would benefit from a more flexible and decentralized aftercare concept, to which telemedicine could contribute. LVAD-specific expertise among general healthcare providers is perceived as insufficient by patients and could be strengthened through training and counseling services. The broad scope of tasks and the high level of responsibilities in LVAD aftercare pose challenges for patients and their families, which could be addressed through continuous information and training programs.

[Identification and Prioritization of Research Questions on Paraplegia Caused by Traumatic Spinal Cord Injury with Those Affected, Their Relatives and Health Care Professionals]. / Identifizierung und Priorisierung von Forschungsfragen zu Paraplegie infolge einer unfallbedingten Querschnittlähmung mit Betroffenen, Angehörigen und professionell Versorgenden.

BACKGROUND: Objective With expertise based on experience, paraplegics, their relatives and health care professionals can contribute to the development of research questions relevant for those affected and those in health care practice. For this purpose, the James Lind Alliance (JLA) has provided a methodological approach. The aim of this study was to develop a research agenda for paraplegia resulting from traumatic spinal cord injury with an adapted JLA approach. METHODS: Four consecutive online surveys of people with paraplegia caused by traumatic spinal cord injury, their relatives and caregivers were conducted. In the first survey, the respondents freely formulated research questions unanswered from their point of view. These were synthesized and checked to see if they can already be answered by available evidence. The unresolved questions were prioritized stepwise in the subsequent surveys. In the second survey, the relevance of questions was rated on a five-point rating scale (1-5). Questions with a mean value of 4 or higher were taken up in the third survey, in which the 10 most relevant questions were determined. These were ranked in the fourth survey as a top-10 list. RESULTS: Based on the first survey (n=52), 38 unresolved research questions were identified. Of these, 26 questions were rated as important (2nd survey; n=53), from which 10 questions were selected (3rd survey; n=17) and ranked (4th survey; n=12) as a top-10 list. Four prioritized questions related to treatment of spinal cord injury or associated health issues, three to aspects of the health care system with regard to assistive devices and the implementation of new therapies, two to possibilities of those affected to improve their own situation, and one to research on the course of disease. CONCLUSIONS: Nine priorities focus on research that could help improve the life and health care situation of paraplegic patients and one on curative treatment. The prioritized questions should be taken up by researchers and research funders for the benefit of patients and to help health care providers. For some priorities, a need for research was consistently identified in present guidelines or systematic reviews.

Psychological burden and coping in destination therapy patients with a left ventricular assist device: A qualitative content analysis.

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.

Factors influencing health-related quality of life of patients with a left ventricular assist device: a systematic review and thematic synthesis.

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.

Living with a left ventricular assist device: psychological burden and coping: protocol for a cross-sectional and longitudinal qualitative study.

INTRODUCTION: Due 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 ANALYSIS: An 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 DISSEMINATION: Ethical 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 NUMBER: German Clinical Trials Register (DRKS00016883).

Priorities of patients, caregivers and health-care professionals for health research - A systematic review.

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.