Examining illness perceptions over time: an exploratory prospective analysis of causal attributions in individuals with depressive symptoms.

BACKGROUND: According to the Common-Sense Model of Illness Representations, illness beliefs, such as causal attributions, can influence the way people assess and cope with their illness and vice versa. To date, causal attributions in people with depressive symptoms have been studied mainly cross-sectionally, quantitatively and independently. The purpose of this study is to examine the causal attributions of people with depressive symptoms in terms of their stability over time, dependence on treatment experience, and differentiation of causal concepts. METHODS: In a population-based prospective sample, people with at least mild depressive symptoms (PHQ-9 Score ≥ 5) were interviewed via telephone at T0 and twelve months later (T1). Causal attributions were assessed using the Brief Illness Perception Questionnaire. After the open responses were qualitatively analysed using a deductive-inductive approach, stability over time was assessed for causal attributions and concepts by comparing answers between the two time points. Subsequent exploratory quantitative analyses were conducted using chi-square tests, t-tests, and logistic regression analyses. RESULTS: A total of 471 individuals (age M = 53.9, 53.6% female) with a mean PHQ-9 Score of 8.4 were included in the analyses. Causal attributions related to participants' social environment, workplace, and past are the most stable over time. However, individuals with and without a time-stable causal concept showed no differences in terms of sociodemographic characteristics, severity of depressive symptoms, risk of comorbidity, and treatment experiences. Overall, the causal concepts of people with depressive symptoms appear to be very diverse. Those with treatment experience (M = 2.21, SD = 0.80) named significantly more causal attributions compared to people without treatment experience (M = 1.98, SD = 0.81, t(471) = -3.060, p < 0.01). In addition, logistic regression analyses revealed that treatment-experienced respondents were more likely to attribute "childhood/youth/parental home" and "predisposition". CONCLUSIONS: Our study reveals that people with treatment experience tend to report treatment-congruent causal attributions, such as childhood and family environment, as well as predisposition, more frequently. Understanding how causal attributions and concepts are formed and change can be helpful for addressing causal attributions in treatment. Future studies should take into account the benefits of employing qualitative survey methods for exploring causal attributions.

Impact of Contextual Factors on the Perceived Participation of People With Multiple Sclerosis and Gait Impairment Using Mobility Assistive Devices: A Qualitative Analysis.

INTRODUCTION: People with multiple sclerosis and gait impairment are particularly susceptible to facing restrictions in their participation. This study aims to investigate (a) which contextual factors within the framework of the International Classification of Functioning, Disability and Health (ICF) are relevant for participation from the perspective of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices, and (b) how these contextual factors shape the subjective facets of participation, including a sense of connection, efficacy and meaning, based on the social identity approach to health and well-being. METHODS: We conducted a qualitative analysis on data gathered from four online focus group interviews, each involving four to six people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices (totalling N = 19), and 12 individual online interviews conducted with participants from the focus group interviews. The analysis followed the qualitative content analysis according to Kuckartz. RESULTS: Mobility assistive devices such as walkers, manual wheelchairs and electric wheelchairs/scooters were seen as facilitators that enabled participation in various life situations and enhanced a sense of efficacy by promoting independence. Challenges were encountered in relation to architectural barriers, pathways, weather conditions, public transportation and the lack of integral accessibility to services and systems. Although instrumental support could ease participation, it was also associated with an impaired sense of efficacy. Attitudes, particularly developing an understanding of the experiences of people with multiple sclerosis and gait impairment from others' perspectives, were considered important but often lacking, and discriminatory attitudes were experienced. On the level of personal factors, acceptance of both the mobility assistive devices and the disease itself were seen as facilitators for maintaining involvement in life situations. CONCLUSIONS: This study extends the existing literature by shedding light on the interconnectedness of contextual factors within the ICF and various facets of perceived participation, including a sense of connection, efficacy and meaning. These findings provide valuable insights for stakeholders such as urban planners and policymakers in developing inclusive environments that enhance the overall quality of participation for people with multiple sclerosis and gait impairment. PATIENT OR PUBLIC CONTRIBUTION: This study reports on the lived experiences of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices. The research team stood in close exchange with project members of the German Multiple Sclerosis Society Lower Saxony, a group representing the interests of people with multiple sclerosis, to design and conduct the focus group interviews. The results from the focus group interviews were the basis for the design of a participatory future workshop in which people with multiple sclerosis and stakeholders involved in the healthcare process collaboratively developed recommendations for improving the provision of mobility assistive devices. TRIAL REGISTRATION: German Clinical Trials Register number: DRKS00025532.

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.

[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.

[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.

[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.

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.

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.

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.

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.

Illness beliefs about depression among patients seeking depression care and patients seeking cardiac care: an exploratory analysis using a mixed method design.

BACKGROUND: Treatment of depression in cardiac patients is difficult. Patients' illness beliefs regarding depression are associated with outcomes. The aim of the mixed-methods study was to test whether patients in routine care for depression differ from patients with depression in routine care for cardiac diseases regarding illness beliefs about depression. METHODS: A consecutive sample of n = 217 patients with depressive disorder was recruited from routine care for depression (N = 148) and routine care for cardiac diseases (N = 69). Beliefs about depression were measured by the Brief-Illness Perception Questionnaire. Causal beliefs were categorized using qualitative methods. To investigate differences regarding other illness beliefs, we performed an ANCOVA controlling for sociodemographic and clinical differences by propensity score matching. RESULTS: Patients in routine care for cardiac diseases attributed their depression more often to physical illnesses (48% vs. 16%) and less often to their self (30% vs. 47%), problems at work (25% vs. 35%), childhood (25% vs. 30%), and negative life events (19% vs. 25%) in contrast to patients in routine care for depression. Patients in routine care for cardiac diseases reported beliefs of lower disability, burden, and treatment-control and of higher self-control in contrast to patients in routine care for depression. CONCLUSIONS: Illness beliefs especially causal beliefs differ between patients in routine care for cardiac diseases and routine care for depression. Future research should investigate effects of these illness beliefs. We recommend exploring patients' illness beliefs about depression in routine care for cardiac diseases and routine care for depression.

Collaborative mental health care program versus a general practitioner program and usual care for treatment of patients with mental or neurological disorders in Germany: protocol of a multiperspective evaluation study.

BACKGROUND: German statutory health insurances are pursuing the goal of improving treatment of chronically ill people by promoting networks of health care providers and supporting treatments that reflect the current medical knowledge. The so-called PNP program is a collaborative care program developed by a German statutory health insurance, which defines specific rules on psychiatric, neurological, psychosomatic, and psychotherapeutic treatment. It aims to strengthen provision of guideline-based outpatient treatment and collaboration between different health care providers. It includes the general practitioners' program, which aims to strengthen the coordinating role of GPs. This study aims to evaluate the PNP program. METHODS: To evaluate the effectiveness of the PNP program, we will conduct a prospective non-randomized controlled trial with primary data comparing patients enrolled in the PNP program and in the general practitioner program (intervention group) to patients enrolled only in the general practitioner program and patients who receive usual care (control groups). To evaluate costs and level of detail of diagnoses in care of patients with PNP program, we will use routinely collected secondary administrative health data in a retrospective quasi-experimental design. Patients who are at least 18 years old, insured by the statutory health insurance AOK, and on sick leave due to one of the mental or neurological diagnoses (affective, anxiety, somatoform or adjustment disorders, alcohol use disorders, schizophrenia, multiple sclerosis) will be included. We will collect data at baseline and at 12-months follow-up. Health-related quality of life (primary data) and direct costs (secondary data) caused by outpatient and inpatient service utilization and medication will be the primary outcomes. We will analyze data using (generalized) linear mixed models and exploratory analyses. We will use entropy balancing to control for possible differences between the groups. We will use an exploratory sequential design including qualitative and descriptive statistical analyses to assess the structure and process quality of the PNP program among health care providers. DISCUSSION: The results will help to develop a comprehensive picture of collaborative care programs for mental and neurological health care from the perspective of patients, health care providers, and health insurance companies. TRIAL REGISTRATION: German Clinical Trial Register DRKS00013114.

Mentalization and Self-Efficacy as Mediators between Psychological Symptom Severity and Disabilities in Activities and Participation in Psychotherapy Patients.

BACKGROUND: Psychotherapy patients can be more or less disabled by their psychological symptoms. The present study investigated whether mentalization and self-efficacy contribute to the association between psychological symptom severity and disabilities in activities and participation. METHODS: The data of 216 psychotherapy inpatients were examined in a cross-sectional design. Bootstrapping-enhanced mediation analyses were performed to investigate whether self-efficacy and mentalization are mediators between psychological symptom severity and disabilities in activities and participation. The Hamburg Modules for the Assessment of Psychosocial Health-49 were used to measure psychological symptom severity and self-efficacy, mentalization was assessed with the Mentalization Questionnaire, and disabilities in activities and participation were operationalized with the ICF-Mental-A & P questionnaire. RESULTS: Mentalization as well as self-efficacy functioned as mediators between psychological symptom severity and disabilities in activities and participation (p < 0.05). They were equally strong mediators, and both remained significant mediators when statistically controlling for the other mediator (p < 0.05). CONCLUSIONS: Mentalization as well as self-efficacy explain a significant proportion of the relationship between psychological symptom severity and disabilities in activities and participation. Working on mentalizing and self-efficacy might be important mechanisms to reduce disability due to symptoms. The cross-sectional design is a limitation of the study.

[Participatory research : Meaning, concept, objectives and methods]. / Teilhabeforschung : Bedeutung, Konzepte, Zielsetzung und Methoden.

Shaping one's own life and feeling equal in society is an essential aspect of participation. Based on the UN Convention on the Rights of Persons with Disabilities, the Social Security Code IX and the International Classification of Functioning, Disability and Health (ICF), participation is relevant for the German health system. The cross-sectional discipline of participation research investigates conditions for self-determined and equal participation in society. Research results can reinforce and promote the participation of humans with disabilities. Participation research uses established quantitative and qualitative approaches. Moreover, participatory research is a relevant approach that demands involving persons with disabilities in decisions in the research process. In the future, it will be important to concentrate findings and to connect researchers. The participation research action alliance (Aktionsbündnis Teilhabeforschung), which was established in 2015, aims to make funding accessible as well as strengthen and profile participation research.

[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.

[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.

Subgroup analyses and patterns of multiple sclerosis health service utilisation: A cluster analysis.

Background: Previous investigations of multiple sclerosis (MS)-related healthcare have focused on utilisation of specific individual health services (e.g. hospital care, office-based neurologists) by people with MS (PwMS). Meanwhile, little is known about possible patterns of utilisation across health services and their potential differences across patient characteristics. Objective: To comprehensively analyse and identify patterns of MS-related health service utilisation and detect patient characteristics explaining such patterns. Methods: In 2021, we invited all PwMS insured by the largest insurance company in Lower Saxony, Germany, to take part in an online survey. We merged respondents' survey and health insurance claims data. We analysed MS-related health service utilisation and defined individual characteristics for subgroup analyses based on Andersen's Behavioural Model. We executed non-parametric missing value imputation and conducted hierarchical clustering to find patterns in health service utilisation. Results: Of 6928 PwMS, 1935 responded to our survey and 1803 were included in the cluster analysis. We identified four distinct health service utilisation clusters: (1) regular users (n = 1130), (2) assistive care users (n = 443), (3) low users (n = 195) and (4) special services users (n = 35). Clusters differ by patient characteristics (e.g. age, impairment). Conclusion: Our findings highlight the complexity of MS-related health service utilisation and provide relevant stakeholders with information allowing them to tailor healthcare planning according to utilisation patterns.

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).