[The situation of early career researchers in health services research: A survey study]. / Situation des wissenschaftlichen Nachwuchses in der Versorgungsforschung ­ eine Survey-Studie.

BACKGROUND: Early career researchers in health services research work in an interdisciplinary field of research. So far, information on early career researchers in health services research has only been available from surveys of individual disciplines, which do not adequately reflect the concerns in the field of health services research. Therefore, a working group of the German Network for Health Services Research (DNVF) conducted a first survey. The following research questions can be answered on the basis of the data obtained: (1) Which socio-demographic aspects characterize early career researchers in health services research? (2) What is the professional biographical background of early career researchers in health services research? (3) What are the research fields of early career researchers? (4) What are the career perspectives of early career researchers? METHOD: The survey among early career researchers was conducted as an online survey in January/February 2019. The study was addressed to individuals currently working as early career researchers in health services research in Germany. The online survey was conducted using a standardized questionnaire. Participants were recruited through the DNVF access points and by snowball sampling. RESULTS: 336 early career researcher aged between 23 and 57 participated in the online survey study, 102 of whom held a doctorate. The majority were employed as scientific staff (58%) and were in temporary employment (75%); 69% of them were emplyed at a university, followed by health care institutions (17%) and non-university research institutions (16%). About one-third of the respondents (36%) completed a vocational training prior to their studies. Of the participants, 50% said they were strongly or very strongly aspiring to a professional career in academia, 43% at a non-university research institution, and 30% at a university of applied sciences. DISCUSSION: The results of the online survey show the heterogeneity in terms of age and professional biography of early career researchers in health services research. Few researchers have permanent positions. However, the majority of respondents would like to have a professional future at a university, a research institute or a university of applied sciences. Further studies should be conducted to determine (possible) career paths taken by young scientists in health services research. CONCLUSION: There is still scope for improvement in the promotion of early career researchers.

[Research partners in health services research: need, acceptance and feasibility of preparatory trainings]. / Forschungspartner*innen in der Versorgungsforschung: Bedarf, Akzeptanz und Umsetzbarkeit von vorbereitenden Schulungen.

AIM: The aim of this online survey was to assess the need, acceptance and practical feasibility of a training program for research partners in health services research by patients and the public. METHOD: In January 2023, we sent the survey to patient associations and groups nationwide via Patient Advisory Board members of the German Network for Health Services Research (DNVF). The survey included both closed and open questions. The research team analysed the information provided by the participants (n=125) descriptively and used content analysis according to Kuckartz and Rädiker (2022). RESULTS: The majority (90.4%) of respondents considered patient and the public involvement in the planning and implementation of scientific studies to be very or extremely important. 41.5% (17.9%) of respondents indicated that more than 10% (more than 25%) of patients would be willing to participate in free training and be available as research partners. More than three-quarters (76.8%) of respondents agreed that training was very or extremely important. Participants preferred written information (57.3%), short online training (56.5%) and short digital information sessions (53.2%). Frequently cited barriers to delivering training include travel costs (60%), time (53.3%) and the need for extensive prior information (48.3%). Participants' suggestions for successful training implementation included comprehensibility of the training program and its organisation (location, duration and format). CONCLUSION: In addition to the high training needs of research partners, the results also reveal some obstacles. A compact, comprehensible and digital information event with written information material increases acceptance. Researchers should take these results into account when designing and implementing training programs.

Influence of health system and patient characteristics on expectations and outcome in total hip arthroplasty patients in the Dutch-German border region: protocol for a mixed-methods prospective observational comparative study (hip across).

INTRODUCTION: Total hip arthroplasty (THA) is the treatment of choice for end-stage osteoarthritis of the hip. Management of THA differs between countries, and it is hypothesised that this can influence patients' expectations and self-efficacy. Using Chen's intervening mechanism evaluation approach, this study aims to explore how structure of care influences expectations and self-efficacy of patients undergoing THA, and how expectations and self-efficacy in turn influence outcome in terms of perceived physical function and satisfaction. METHODS AND ANALYSIS: A mixed-methods study will be conducted in two German and two Dutch hospitals near the Dutch-German border. In the quantitative part, patients will complete questionnaires at three timepoints: preoperatively and at 3 and 6 months postoperatively. Data analysis will include multiple regression analysis and structural equation modelling. In the qualitative part, interviews will be held with patients (preoperatively and 3 months postoperatively) and healthcare providers. Analysis will be performed using structured qualitative content analysis. ETHICS AND DISSEMINATION: The study is approved by the Institutional Review Boards of both Carl von Ossietzky University Oldenburg (2021-167) and University Medical Center Groningen (METc 2021/562 and METc 2021/601). The results will be disseminated in the international scientific community via publications and conference presentations. TRIAL REGISTRATION NUMBER: The study is registered in the German Clinical Trials Registry (DRKS: DRKS00026744).

[Need for Action and Research in Psychosomatic and Orthopaedic Rehabilitation from the Point of View of Rehabilitants and Individuals who work in Rehabilitative Care]. / Handlungs- und Forschungsbedarf in der Psychosomatischen und Orthopädischen Rehabilitation aus der Sicht von Rehabilitand:innen und Mitarbeitenden in der Rehabilitation.

PURPOSE: The aim of this study was to assess the need for practical action and research in psychosomatic and orthopaedic rehabilitation from the perspective of rehabilitants and individuals who work in rehabilitative care. METHODS: The project was divided into an identification and a prioritization phase. In the identification phase, 3872 former rehabilitants, 235 employees from three rehabilitation clinics and 31 employees of the German Pension Insurance Oldenburg-Bremen (DRV OL-HB) were invited to participate in a written survey. The participants were asked to name relevant needs for action and research for psychosomatic and orthopaedic rehabilitation. The answers were evaluated qualitatively using an inductively developed coding system. Practical fields of action and research questions were formulated from the categories of the coding system. In the prioritization phase, the identified needs were ranked. For this purpose, 32 rehabilitants were invited to a prioritization workshop and 152 rehabilitants, 239 clinic employees and 37 employees of the DRV OL-HB to a two-round written Delphi survey. The resulting prioritized lists from both methods were combined into a top 10 list. RESULTS: In the identification phase, 217 rehabilitants, 32 clinic employees and 13 employees of the DRV OL-HB participated in the survey, in the prioritization phase, 75 rehabilitants, 33 clinic employees and 8 employees of the DRV OL-HB in both survey rounds of the Delphi survey, and 11 rehabilitants in the prioritization workshop. A need for practical action primarily in the implementation of holistic and individual rehabilitation, in quality assurance and in the education and participation of rehabilitants was identified, as also a need for research primarily on access to rehabilitation, structures in the rehabilitation setting (e. g., inter-agency cooperation), the design of rehabilitative interventions (more individualized, more suitable for everyday life), and the motivation of rehabilitants. CONCLUSION: The identified needs for action and research include many topics that have already been identified as problems in previous research projects and by various actors in rehabilitation. In the future, there needs to be increased focus on the development of strategies for dealing with and solving the identified needs, as well as on the implementation of these strategies.

Implementation, barriers, and recommendations for further development of advance care planning for the last phase of life in nursing homes in Germany (Gut-Leben): protocol for a mixed-methods study.

BACKGROUND: Nursing home entry often marks the transition into the end-of-life. In 2018, Germany legally introduced reimbursement for advance care planning (ACP according to § 132 g SGB V) in nursing homes that applied for ACP approval to improve end-of-life care. The Gut-Leben project aims to evaluate the implementation and barriers of ACP in nursing homes in Germany, with a special focus on the federal state of Lower Saxony, and provide practical recommendations for further development of end-of-life care. METHODS: This mixed-methods study spreads across five work packages (WP) over a three-year period. WP 1 will explore the approval process, implementation, and barriers to ACP in nursing homes. Data will be collected through a national postal survey in a random sample of n = 600. WP 2 will explore whether documented ACP reports are applicable as a data source for research (expecting up to 500 available ACP reports). In WP 3a and 3b, data on the ACP process will be collected in n = 15 approved nursing homes in Lower Saxony over a 12-months period. For WP 3a and WP 3b, data on ACP conversations (n = 600) and on end-of-life care paths (n = 300) will be collected by facilitators and nurses of the respective nursing homes. In WP 4, residents' characteristics upon entry and changes in these characteristics over the length of stay are analyzed, utilizing claims data from the AOK Lower Saxony (expected sample of about 100,000 people entering nursing homes over a 10-years period). WP 5 connects, interprets, and reflects on the findings from WP 1-4 through focus groups and individual interviews with facilitators, nursing staff, residents, relatives, and care providers. Within a participatory approach, a practice advisory board will be set up existing of personal of nursing homes and will be closely involved in the whole research process. DISCUSSION: In summary, the Gut-Leben project provides insight into the implementation and barriers of ACP in nursing homes according to German legislation for the first time, including practitioners' and residents' perspectives. Insights will help the further development of ACP in Germany through practical recommendations based on quantitative and qualitative data.

[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.

Mentalizing Mediates the Association between Narcissism and Psychotherapeutic Treatment Outcome in a Mixed Clinical Sample.

INTRODUCTION: Pathological narcissism has been a challenge for the success of psychological treatment, whereas mentalizing has turned out to be an important mechanism of change in psychotherapy. This study focused on the classic narcissistic self (CNS) (i.e., narcissistic grandiosity) as predictor of the outcome. It further investigated whether mentalizing mediates this relation. METHODS: A mixed clinical sample of 205 patients was investigated. The CNS scale of the Narcissism Inventory and the Mentalization Questionnaire was used to measure the features of narcissistic grandiosity and the capacity to mentalize, respectively. The symptom outcome was assessed with the Hamburg Modules for the Assessment of Psychosocial Health. RESULTS: Contrary to our expectations, we did not find a direct association between narcissistic grandiosity and a decrease in symptoms. However, mentalizing was found to mediate the association between the CNS as well as between the narcissistic furor and outcome. CONCLUSION: Our results confirm the ambiguity concerning the clinical significance of narcissistic grandiosity. However, in order to improve the treatment outcome in patients with narcissistic features, especially narcissistic furor, individualized treatment plans might consider introducing interventions that enhance the capacity to mentalize.

Patients' Health Literacy in Rehabilitation: Comparison between the Estimation of Patients and Health Care Professionals.

The term health literacy (HL) comprises the handling of health information and disease-specific and generic self-management skills, especially relevant for patients with chronic conditions. Health care professionals (HCPs) should correctly identify patients' communication needs and their HL levels. Therefore, the aims of the study were (1) to determine inpatient medical rehabilitation patients' HL based on self-assessment, (2) to evaluate changes from admission to discharge, (3) to identify HCPs estimation of patients' HL, and (4) to compare the estimated patient HL by patients and HCPs. A combined cross-sectional and longitudinal study was conducted in an orthopedic rehabilitation center in Germany. The multidimensional Health Literacy Questionnaire (HLQ) was filled in by patients (admission, discharge). An adapted version was administered to HCPs (n = 32) in order to assess HL of individual patients. Data from 287 patients were used for the longitudinal analysis, and comparison was based on n = 278 cases with at least two HL estimations. The results showed a significant increase in HL in five of nine scales with small effect sizes. Moreover, HCPs mostly provided higher scores than patients, and agreement was poor to fair. Differences between the HL estimation might lead to communication problems, and communication training could be useful.

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.

Organizational Health Literacy in a Hospital-Insights on the Patients' Perspective.

Health literacy-sensitive communication has been found to be an important dimension of organizational health literacy measured from the patients' perspective. Little is known about the role of health literacy-sensitive communication in complex care structures. Therefore, our aim was to assess which hospital characteristics (in terms of process organization) and patient characteristics (e.g., age, chronic illness, etc.) contribute to better perceptions of health literacy-sensitive communication, as well as whether better health literacy-sensitive communication is associated with better patient reported experiences. Data were derived from a patient survey conducted in 2020 in four clinical departments of a university hospital in Germany. Health literacy-sensitive communication was measured with the HL-COM scale. Data from 209 patients (response rate 24.2%) were analyzed with a structural equation model (SEM). Results revealed that no patient characteristics were associated with HL-COM scores. Better process organization as perceived by patients was associated with significantly better HL-COM scores, and, in turn, better HL-COM scores were associated with more patient-reported social support provided by physicians and nurses as well as fewer unmet information needs. Investing into good process organization might improve health literacy-sensitive communication, which in turn has the potential to foster the patient-provider relationship as well as to reduce unmet information needs of patients.

How is and how should healthcare for people with multiple sclerosis in Germany be designed?-The rationale and protocol for the mixed-methods study Multiple Sclerosis-Patient-Oriented Care in Lower Saxony (MS-PoV).

BACKGROUND: Multiple sclerosis (MS) is the most common autoimmune inflammatory disease of the central nervous system in Europe, often causing severe physical, cognitive and emotional impairments. Currently, it is unclear whether the healthcare provisions of people with MS (PwMS) are in line with the recommendations for treatment based on guidelines or patients' needs. The main objectives of the study are as follows: (a) to investigate how well PwMS are treated; and (b) to develop a needs-oriented, patient-centred care model. METHODS: This mixed-methods study focuses on adult PwMS living in Lower Saxony, a federal state in Germany. The qualitative study comprises focus groups with PwMS, physicians and people involved in the healthcare process as well as a future workshop. The quantitative study comprises a cross-sectional online survey and addresses the patient-relevant outcomes and needs, as previously determined by literature searches and focus groups. It will be administered to all PwMS who are insured by the statutory health insurance company involved in the project (n~7,000). The survey data will be linked to the longitudinal secondary data from the statutory health insurance company and data from the German MS registry where available. The linked and single data sources will be statistically analysed. DISCUSSION: By comprehensively comparing the current healthcare provisions with the needs and requirements of PwMS, the strengths and weaknesses of the overall healthcare process and provision of assistive devices can be identified. The barriers and facilitators of the health service providers and their impact on daily life will be explored (qualitative analyses). Reliable recommendations for improvements will be given based on a study population drawn from the largest statutory health insurance company in Lower Saxony (quantitative analyses). However, the inherent advantages and limitations of the qualitative and quantitative research approaches need to be considered. TRIAL REGISTRATION: The study is registered at German Clinical Trials Register DRKS00021741.

Improving professional health literacy in hospitals: study protocol of a participatory codesign and implementation study.

INTRODUCTION: In connection with a hospital stay, patients have to make important health-related decisions. They need to find, understand, assess and apply health-related information, and therefore, require health literacy. Adequately responding to the needs of patients requires promoting the communication skills of healthcare professionals within healthcare organisations. Health-literate healthcare organisations can provide an environment strengthening professionals' and patients' health literacy. When developing health-literate healthcare organisations, it has to be considered that implementing organisational change is typically challenging. In this study, a communication concept based on previously evaluated communication training is codesigned, implemented and evaluated in four clinical departments of a university hospital. METHOD AND ANALYSIS: In a codesign phase, focus group interviews among employees and patients as well as a workshop series with employees and hospital management are used to tailor the communication concept to the clinical departments and to patients' needs. Also, representatives responsible for the topic of health literacy are established among employees. The communication concept is implemented over a 12-month period; outcomes studied are health literacy on the organisational and patient levels. Longitudinal survey data acquired from a control cohort prior to the implementation phase are compared with data of an intervention cohort after the implementation phase. Moreover, survey data from healthcare professionals before and after the implementation are compared. For formative evaluation, healthcare professionals are interviewed in focus groups. ETHICS AND DISSEMINATION: The study protocol was approved by the Ethics Committee of the Medical Faculty of the University of Oldenburg and is in accordance with the Declaration of Helsinki. Study participants are asked to provide written informed consent. The results are disseminated via direct communication within the hospital, publications and conference presentations. If the intervention turns out to be successful, the intervention and implementation strategies will be made available to other hospitals. TRIAL REGISTRATION NUMBER: DRKS00019830.

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.

Public and patient involvement (PPI) in health policy decisionmaking on the health system-level: protocol for a systematic scoping review.

INTRODUCTION: Public and patient involvement (PPI) in healthcare decisions at the health system-level (macro-level) has become increasingly important during recent years. Existing evidence indicates that PPI increase patient centredness and the democracy of healthcare decisions as well as patients' trust and acceptance of these decisions. However, different methods for PPI exist, and an overview of the outcomes and influential contextual factors has not yet been conducted. Therefore, this scoping review aims to provide an overview of the different methods used for PPI in health system decisionmaking and the reported outcomes and contextual factors for these methods. METHODS AND ANALYSIS: The structure of this protocol is guided by the advanced scoping studies framework of Arksey and O' Malley, developed by Levac, Colquhoun and O'Brien, and the PRISMA-ScR Statement. We will systematically search electronic databases (MEDLINE, Cochrane Library, Scopus, CINAHL, PDQ-Evidence, Web of Science and PsycINFO) for peer-reviewed literature and screen the reference lists of included studies. Additionally, we will search for relevant grey literature and consult experts from the field to identify further information. Studies focusing on PPI in the context of health policy decision-making at the macro-level will be eligible for full-text screening. Studies focusing on decisions at the individual treatment-level (micro-level) and the organisational-level (mesolevel) as well as those dealing with PPI in health research will be excluded. A qualitative analysis will dissect how the included studies define PPI and its desirable outcomes, the achieved outcomes and reported contextual factors. ETHICS AND DISSEMINATION: We will present the results at relevant conferences and in an open-access journal. Additionally, we will share them with the experts involved in the research process and consider ways in which to transfer the findings into practice. As only secondary and previously published information will be used, ethical approval is not necessary.

Influence of established and subjectively perceived as well as evaluated individual characteristics on the utilization of mental health services among individuals with depressive disorders: protocol of a longitudinal study examining how to supplement the "behavioral model of health services use" and on need-congruent use of mental health services.

BACKGROUND: Approximately one out of every three people in Germany who meets the diagnostic criteria for major depression has contact with mental health services. Therefore, according to treatment guidelines, two thirds of all individuals with depression are insufficiently treated. In the past, the subjective perspective of people who (do not) make use of mental health services has been neglected. Factors related to the use of health services are described in Andersen's Behavioral Model of Health Services Use (ABM). The aim of this study is to supplement operationalizations of subjectively perceived and evaluated individual characteristics in the ABM and to evaluate whether the supplemented model can better explain mental health services use in individuals with depression than established operationalizations. METHODS: A representative telephone study with two measurement points will be conducted. In an explanatory mixed-methods design, qualitative interviews will be added to further interpret the quantitative data. A nationwide sample scoring 5 or more on the Patient Health Questionnaire (PHQ-9) will be recruited and interviewed via telephone at T0 and 12 months later (T1). Data on established and subjective characteristics as well as mental health service use will be collected. At T1, conducting a diagnostic interview (Composite International Diagnostic Interview, DIA-X-12/M-CIDI) enables the recording of 12-month diagnoses according to DSM-IV-TR criteria. Ideally, n = 768 datasets will be available and analyzed descriptively by means of regression analysis. Up to n = 32 persons who use or do not use depression-specific health services incongruent with their objective or subjective needs will be interviewed (face-to-face) to better explain their behavior. In addition, theories of non-need-based mental health service use are developed within the framework of the grounded theory-based analysis of the qualitative interviews. DISCUSSION: The study intends to contribute to the theoretical foundation of health services research and to specify the characteristics described in the ABM. Thus, after completion of the study, a further sophisticated and empirically tested model will be available to explain mental health services. The identified modifiable influencing factors are relevant for the development of strategies to increase mental health service use in line with the objective and subjective needs of individuals with depression.

Research priorities set by people with OCD and OCD researchers: Do the commonalities outweigh the differences?

OBJECTIVE: In contrast to research agendas being predominantly set by scientists or funders, a collaborative approach was used to spot future goals for research on obsessive-compulsive disorder. METHODS: First, we conducted a meta-review and then compared the results of two online surveys with OCD professionals and patients on research priorities. The literature search was performed in three comprehensive databases, and ten research goals were extracted. Sixty-four patients and eight professionals responded to open questions on their five most important goals. Then, they ranked the ten aims extracted from the literature on a 6-point Likert scale. RESULTS: For patients and professionals, research on treatment gains that persist long-term was most important. Concerning the top five goals listed in an open format, for patients, development and maintenance of the disease was as important as psychotherapy and its efficacy. In contrast, for professionals, the efficacy and the optimization of psychotherapy were the far most important research goals. CONCLUSIONS: We proposed one possibility to involve patients in OCD research, and the multitude of answers presents a wealth of research ideas. PRACTICE IMPLICATIONS: Since consistent research involvement may contribute to its clinical impact, researchers are now invited to translate our findings into empirical studies.

Patient involvement in developing a patient-targeted feedback intervention after depression screening in primary care within the randomized controlled trial GET.FEEDBACK.GP.

BACKGROUND: Patient and public involvement (PPI) is increasingly required in mental health services research. To empower patients to actively address depression, the GET.FEEDBACK.GP study evaluates a patient-targeted feedback intervention after depression screening using the Patient Health Questionnaire (PHQ-9). OBJECTIVE: To refine the patient-targeted feedback from a previous study within a participatory research team (PRT) by conducting workshops to investigate patients' needs and preferences for feedback. To evaluate the process and outcome of PPI. DESIGN: Patient and public involvement was carried out on the levels of collaboration and consultation. A PRT of patient partners and researchers planned and conducted three workshops with patients. Patients' needs were investigated using a focus group. Participants prioritized needs, discussed feedback drafts and evaluated two drafts using cognitive debriefings. Researchers of the PRT communicated the results at project level. PPI was evaluated using the Public and Patient Engagement Evaluation Tools (PPEET). SETTING AND PARTICIPANTS: A purposeful sampling of N = 12 patients with experiences of depression participated in at least one workshop. RESULTS: Relevant content-related needs about feedback (eg no distinction between severe and moderate symptoms), recommendations for action and patient-relevant information were considered. Needs for comprehensible, valuing, nonstigmatizing language and design elements (eg dimensional bar) were implemented. Workshops and PRT were positively evaluated. DISCUSSION AND CONCLUSIONS: Patient and public involvement influenced the content, wording and design of the feedback. Strengths include two levels of PPI, methodical diversity and purposeful sampling. Limitations include the lack of inclusion of patients who are unaware of their depression. The evaluated PPI concept can be useful for future studies.

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.