Patient experiences of interprofessional collaboration and intersectoral communication in rare disease healthcare in Germany - a mixed-methods study.

BACKGROUND: Rare diseases are often complex, chronic and many of them life-shortening. In Germany, healthcare for rare diseases is organized in expert centers for rare diseases. Most patients additionally have regional general practicioners and specialists for basic medical care. Thus, collaboration and information exchange between sectors is highly relevant. Our study focuses on the patient and caregiver perspective on intersectoral and interdisciplinary care between local healthcare professionals (HCPs) and centers for rare diseases in Germany. The aims were (1) to investigate patients' and caregivers' general experience of healthcare, (2) to analyse patients' and caregivers' perception of collaboration and cooperation between local healthcare professionals and expert centers for rare diseases and (3) to investigate patients' and caregivers' satisfaction with healthcare in the expert centers for rare diseases. RESULTS: In total 299 individuals of whom 176 were patients and 123 were caregivers to pediatric patients participated in a survey using a questionnaire comprising several instruments and constructs. Fifty participants were additionally interviewed using a semistructured guideline. Most patients reported to receive written information about their care, have a contact person for medical issues and experienced interdisciplinary exchange within the centers for rare diseases. Patients and caregivers in our sample were mainly satisfied with the healthcare in the centers for rare diseases. The qualitative interviews showed a rather mixed picture including experiences of uncoordinated care, low engagement and communication difficulties between professionals of different sectors. Patients reported several factors that influenced the organization and quality of healthcare e.g. engagement and health literacy in patients or engagement of HCPs. CONCLUSIONS: Our findings indicate the high relevance of transferring affected patients to specialized care as fast as possible to provide best medical treatment and increase patient satisfaction. Intersectoral collaboration should exceed written information exchange and should unburden patients of being and feeling responsible for communication between sectors and specialists. Results indicate a lack of inclusion of psychosocial aspects in routine care, which suggests opportunities for necessary improvements.

Subjective Health Status, Health-Related Behavior, and Health Literacy of Health Professional Students: Results from a Cross-Sectional Study.

The importance of health promotion for health professional students is increasingly crucial, as the rising requirements for those students can have a negative impact on their health. Despite this awareness, there is still limited knowledge in Germany about the specific health needs of this group of students. This study's aim was, therefore, to assess the subjective health of first-year students and to identify health needs. Thus, this study is based on an online survey using standardized measurement instruments. First-year students from three degree programs were included. The data were analyzed descriptively. A total of n = 98 (72.6%) participated in the survey. The results showed that a major proportion of participants (80.3%) rated their health positively, but a significant proportion reported weight disorders (24%) and pre-existing health conditions (62.1%) at baseline. Interestingly, a high proportion (59%) reported a high level of mental well-being at the time of the survey. However, worrying findings regarding lifestyle behaviors, including physical inactivity (40.6%), smoking (20%), risky alcohol use (24%), and unhealthy eating habits (37%) were determined. In terms of health literacy, around 45% of students rated their health competencies as problematic. Furthermore, it was found that students with low health literacy had a significantly higher prevalence of low mental well-being (53.3% vs. 30.8%, p = 0.036) and unhealthy eating habits (48.8% vs. 26.5%, p = 0.027) compared to students with sufficient health literacy. Health professional students should be considered a relevant target group for health and health competence promotion from the beginning of their studies. The identified fields of action should be addressed in the context of health promotion. This is of particular importance as they are not only aimed at improving the students' well-being but also will later work directly with patients and, therefore, have a direct influence on the health of others.

[Healthcare for people with rare diseases: recommendations for successful intersectoral collaboration]. / Versorgung von Menschen mit Seltenen Erkrankungen: Empfehlungen für eine gelungene intersektorale Zusammenarbeit.

BACKGROUND: Rare diseases often present complex symptoms and usually require intersectoral collaboration during diagnostic and therapeutic processes involving inpatient and outpatient care. Hence, smooth interfaces with little loss of information and cooperation are essential to provide appropriate care. Our study, the project ESE-Best, aims at developing recommendations for the design and implementation of intersectoral care for patients with rare diseases using various survey instruments. METHODS: Using quantitative and qualitative methods, multiple perspectives (primary physicians, expert centers of rare diseases, patients, parents) were assessed. Additionally, two expert workshops were conducted. RESULTS: Based on findings from our data, we formulated 28 recommendations in the following areas: (1) networking between primary physicians and expert centers, (2) intersections within the expert centers, (3) awareness of rare diseases, structures of expert centers and responsibilities, (4) collaboration between expert centers and patients/caregivers, and (5) further recommendations. CONCLUSION: Our recommendations provide a basis for a working management of intersectoral care in rare diseases. As the recommendations are based on broad data including multiple perspectives, external validity and feasibility can be assumed. Still, time and human resources as well as organizational structures in single centers or practices and regional structures need to be taken into account as they may impact intersectoral care.

Documentation of psoriasis in routine care - expert consensus on a German data set.

BACKGROUND AND OBJECTIVES: Documenting patient data in psoriasis clinical practice can improve care, but standardized and transparent documentation is rare. The current project aimed to develop a data set for the documentation of psoriasis in daily practice. MATERIAL AND METHODS: In four online Delphi rounds and one in-person meeting, 27 psoriasis experts allocated variables to a standard, an optimal and an optional data set. Most of the questions were standardized. Open questions were included to allow for the provision of reasons and to enlarge the data sets. Furthermore, in the in-person meeting we considered a) patients' attitudes and b) dermatologists' information on the current usage and acceptability in Germany. RESULTS: The consensus approach resulted in a data set with 69 variables. The standard data set includes 20, the optimal data set 31 and the optional data set 18 variables. In summary, the data set can mainly be grouped into master data, general status and medical history data, medical history of psoriasis, status of psoriasis, diagnostics and comorbidity, therapies and patient-reported outcomes. CONCLUSIONS: The consensus recommendation of a standard, an optimal and an optional data set for routine care of psoriasis intends to be a decision-making aid and an orientation for both daily practice and further development of documentation systems.

Interface management concepts in healthcare for rare diseases in Germany: a study protocol for a mixed-methods study to develop best practice recommendations.

INTRODUCTION: Patients and families affected by a rare disease are burdened in multiple ways. Functional interface management can unburden patients or relatives from the need to be solely accountable for the navigation through the healthcare system. This study aims at (1) providing an assessment of approaches and interface management concepts in the care of rare diseases, (2) evaluating selected existing approaches and concepts and (3) developing best practice recommendations for interface management. METHODS AND ANALYSIS: We will conduct a mixed-methods study with three phases. In phase 1, we will develop a tool to assess existing concepts of interface management for rare diseases based on a literature search and an expert workshop. The tool will be applied in a telephone survey with representatives of centres or clinics of expertise for rare diseases (target: n=100) and cooperating practitioners (target: n=60). Based on the results of phase 1, we will select four to six centres of expertise with interface management concepts, which will be evaluated extensively in phase 2. For the evaluation, we will conduct semistructured interviews with practitioners cooperating with centres or clinics for rare diseases (target: n=50), a paper-based survey including patients or parents/legal guardians (target: n=300) from the selected centres or clinics, and semistructured interviews with patients or parents/legal guardians (target: n=50). The final phase of the study will be an integration of results from phases 1 and 2 to develop best practice recommendations for interface management in healthcare of rare diseases. In a concluding expert workshop, recommendations will be presented and finalised. ETHICS AND DISSEMINATION: This study was approved by the Local Psychological Ethics Committee of the Center for Psychosocial Medicine of the University Medical Center Hamburg-Eppendorf (LPEK-0062). The findings of our study will be presented on national and international conferences and published in scientific, peer-reviewed journals. To assure that centres for rare diseases get access to the study results, centres are invited to send a representative to a final expert workshop in phase 3. Moreover, an executive summary will be provided and sent to relevant stakeholders. TRIAL REGISTRATION NUMBER: German Clinical Trials Registry (DRKS00020488).