Zusammenfassung Ziel Untersucht werden die Kooperationsbedingungen der beteiligten Akteure in einem Modellprojekt zur Koordination von SGB V- und XII-Leistungen. Methode Interviews mit gemeindepsychiatrischen Akteuren aus der Modellregion und qualitativ-inhaltsanalytischer Auswertung. Ergebnisse Ähnliche Steuerungsziele und Vergütungsmodelle sind Voraussetzungen rechtskreisübergreifender Zusammenarbeit. Gemeindeferne Versorgung sowie (infra-)strukturelle Defizite wirken sich hinderlich aus. Schlussfolgerungen Die Implementierung sektorenübergreifender Finanzierung für Behandlungs- als auch Eingliederungsleistungen sind ein erster Schritt in Richtung rechtskreisübergreifender Kooperation.
Background Differences in sexual development (DSD) are rare diseases, which affect the chromosomal, anatomical or gonadal sex differentiation. Although patient education is recommended as essential in a holistic care approach, standardised programmes are still lacking. The present protocol describes the aims, study design and methods of the Empower-DSD project, which developed an age-adapted multidisciplinary education programme to improve the diagnosis-specific knowledge, skills and empowerment of patients and their parents. Methods The new patient education programme was developed for children, adolescents and young adults with congenital adrenal hyperplasia, Turner syndrome, Klinefelter syndrome or XX-/or XY-DSD and their parents. The quantitative and qualitative evaluation methods include standardised questionnaires, semi-structured interviews, and participatory observation. The main outcomes (assessed three and six months after the end of the programme) are health-related quality of life, disease burden, coping, and diagnosis-specific knowledge. The qualitative evaluation examines individual expectations and perceptions of the programme. The results of the quantitative and qualitative evaluation will be triangulated. Discussion The study Empower-DSD was designed to reduce knowledge gaps regarding the feasibility, acceptance and effects of standardised patient education programmes for children and youth with DSD and their parents. A modular structured patient education programme with four generic and three diagnosis-specific modules based on the ModuS concept previously established for other chronic diseases was developed. The topics, learning objectives and recommended teaching methods are summarised in the structured curricula, one for each diagnosis and age group. At five study centres, 56 trainers were qualified for the implementation of the training programmes. A total of 336 subjects have been already enrolled in the study. The recruitment will go on until August 2022, the last follow-up survey is scheduled for February 2023. The results will help improve multidisciplinary and integrated care for children and youth with DSD and their families. Trial registration German Clinical Trials Register, DRKS00023096. Registered 8 October 2020 – Retrospectively registered.
BackgroundComplementary and Integrative Medicine (CIM), including self-care healthy life-style promotion strategies, is widely used in Germany. Aim of this study was to assess the use of self-care and lifestyle interventions as well as mental/emotional state experienced during the COVID-19 pandemic.MethodsAn exploratory cross-sectional online study was conducted with adults in Germany through an online survey. Custom-developed questions in respiratory disease-status (including COVID-19), CIM-based self-care/lifestyle interventions and dietary patterns, and mental/emotional state as well as parameters for wellbeing (World Health Organization Well-Being Index, WHO-5) and self-efficacy (General Self-Efficacy Short Scale, GSE-3) were assessed. Data was analyzed using frequency and parametric measures.ResultsThe online survey was performed from January to March 2021 and included 1,138 participants (81.5% female; mean age: 49.2 ± 13.7 years; 54.9% holding a university degree) living in Germany, of which 62 had had a positive SARS-CoV-2 test, 4 an influenza infection and 375 participants other respiratory infections. The following individual health promotion strategies were reported: spending time in nature (90%; n = 1,024), physical activity (69.3%; n = 789), naturopathic remedies (63.1%; n = 718), plant-based diet (56.3%; n = 640), and Mind-Body interventions (54.7%; n = 623). No differences in strategies between individuals with respiratory diseases or the sample overall were found. Well-being had a mean value of 15.2 ± 5 (WHO-5) and self-efficacy 4.1 ± 0.6 (GSE-3). Nearly 8% reported a low mental/emotional state regarding the COVID-19 pandemic.ConclusionSelf-care and lifestyle interventions during the COVID-19 pandemic were reported by participants who were predominantly female, middle-aged, and well-educated. Most participants showed an overall balanced mental/emotional state. Further studies should include a representative control group from the general population.Clinical trial registrationclinicaltrials.gov, identifier NCT04653727.
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