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001-es BibID:	BIBFORM109814
035-os BibID:	(cikkazonosító)193 (scopus)85150952445 (wos)000959451600002
Első szerző:	Uhlenbusch, Natalie
Cím:	Improving quality of life in patients with rare autoimmune liver diseases by structured peer-delivered support (Q.RARE.LI) : study protocol for a transnational effectiveness-implementation hybrid trial / Natalie Uhlenbusch, Arpinder Bal, Boglárka Balogh, Annika Braun, Anja Geerts, Gideon Hirschfield, Maciej K. Janik, Ansgar W. Lohse, Piotr Milkiewicz, Mária Papp, Carine Poppe, Christoph Schramm, Löwe Bernd
Dátum:	2023
ISSN:	1471-244X
Megjegyzések:	Aims: Psychosocial support is a crucial component of adequate rare disease care, but to date psychosocial support needs of this patient population are insufficiently met. We strive to evaluate the effectiveness of a peer-delivered psychosocial support intervention in patients with rare autoimmune liver diseases in five countries and prepare its implementation. Methods: The psychosocial support program combines structured, manual-based self-help and peer-support. Participant complete a self-help book from home over the course of six weeks, which is based on Acceptance and Commitment Therapy. In addition, they receive weekly telephone-based support sessions with a trained and supervised peer-counsellor. In a first efficacy trial (Depping et al., 2021, JAMA Psychiatry), the program led to improved quality of life, disease acceptance, self-management abilities, social support and reduced helplessness. Within Q.RARE.LI, we will conduct an effectiveness-implementation hybrid trial. To assess effectiveness, we will include N=240 patients with rare autoimmune liver diseases into a two-armed RCT, comparing the support program in addition to care-as-usual (CAU) with CAU alone. Our primary effectiveness outcome is mental health-related quality of life. To assess implementability, we will conduct a mixed-methods process evaluation, examining perceived acceptability and feasibility of the program and explore its implementability with patients, peer-counselors, and healthcare providers. Based on these results, we will derive country-specific implementation strategies. Discussion: The trans-diagnostic and location-independent program has the potential to address the unmet psychosocial support needs of patients with rare diseases. By preparing the implementation in five countries, we hope to improve comprehensive healthcare for an often neglected group.
Tárgyszavak:	Orvostudományok Klinikai orvostudományok idegen nyelvű folyóiratközlemény külföldi lapban folyóiratcikk
Megjelenés:	BMC Psychiatry. - 23 : 1 (2023), p. 1-11. -
További szerzők:	Bal, Arpinder Balogh Boglárka (1993-) (belgyógyász) Braun, Annika Geerts, Anja Hirschfield, Gideon M. Janik, Maciej K. Lohse, Ansgar W. Milkiewicz, Piotr Papp Mária (1975-) (belgyógyász, gasztroenterológus) Poppe, Carine Schramm, Christoph Bernd, Löwe
Internet cím:	Intézményi repozitóriumban (DEA) tárolt változat DOI
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