Development and evaluation of a patient education programme for children, adolescents, and young adults with differences of sex development (DSD) and their parents: study protocol of Empower-DSD.

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.

["That you stay free, but always know there is this support rod that I need"]. / "Dass man also frei bleibt, aber immer das Gefühl hat: Da ist diese Haltestange, die ich brauch"

OBJECTIVE: Models of integrated care (IC) have a high potential to improve psychiatric care in a sectored health care system. The present study aims to delineate differences in the perception of psychiatric care after introduction of a regional IC-model in schizophrenic patients and family caregivers. METHODS: Six focus group interviews with n = 32 schizophrenic patients and three with n = 17 family caregivers either from the region with IC-model or a nearby control region were conducted. Categories of the contents of transcribed interviews were developed and subsequently compared between persons with and without experience of IC. RESULTS: Most participants of the IC-group were not aware to participate in an IC-model. Differences between IC- vs. non-IC groups were primarily related to feelings of security and experiences of flexibility of care which was ensured by the outpatient nursing service in the IC-model. This was noticeable both in daily living and in coping with crisis. No substantial differences were found with regard to the experience of cooperation of professionals, information and psychoeducation of patients as well as support for family caregivers, amongst others. CONCLUSIONS: IC will play an important part in the psychiatric care of schizophrenic patients. It has the potential to integrate sustainable relations, general availability and needs-related care provision.