Project: Improving health-related quality of life in patients with rare autoimmune liver diseases by structured peer-delivered support: a transnational effectiveness-implementation hybrid trial
| Acronym | Q.RARE.LI (Reference Number: EJPRD21-061) |
| Project Topic | Rare diseases can have a substantial impact on quality of life, and psychosocial support needs of patients often go unmet. In a recent efficacy study, we showed that a newly developed psychosocial support program for patients with rare diseases led to improved quality of life and better acceptance of the disease (Depping et al. JAMA Psychiatry, 2021). The program is delivered by peers, i.e. other affected individuals. As the program is independent of patients’ location and disease, it has the potential to reach many individuals. However, it is not yet available to patients and its effectiveness needs to be confirmed under routine care conditions. Therefore, with the Q.RARE.LI study, we will evaluate the effectiveness of the program in routine care of five different countries and initiate the implementation. The effectiveness under routine care conditions will be analysed in 200 patients with rare autoimmune liver diseases in a randomised controlled study by comparing mental health-related quality of life and further outcomes between patients who receive the intervention in addition to care-as-usual and patients who just receive care-as-usual. We will also evaluate the implementability of the program in a survey and in focus group discussions with different stakeholders including patients, peer-counsellors and healthcare providers. Based on this, we will derive country-specific implementation strategies. Q.RARE.LI will pave the way for widely available psychosocial support for the rare disease community, which can be crucial for patients’ quality of life. |
| Network | EJP RD |
| Call | 3rd EJP RD Joint Transnational Call for Rare Diseases Research Project (JTC 2021) |
Project partner
| Number | Name | Role | Country |
|---|---|---|---|
| 1 | University Medical Centre Hamburg-Eppendorf | Coordinator | Germany |
| 2 | University of Toronto | Partner | Canada |
| 3 | Ghent University Hospital | Partner | Belgium |
| 4 | Medical University of Warsaw | Partner | Poland |
| 5 | University of Debrecen | Partner | Hungary |
| 6 | Deutsche Leberhilfe e.V. | Observer | Germany |
| 7 | Canadian PBC Society | Observer | Canada |
| 8 | Vlaamse PBC- PSC-AIH patientenvereniging VZW | Observer | Belgium |
| 9 | Stowarzyszenie "Życie poprzeszczepie"ul. | Observer | Poland |
| 10 | Hungarian Federation of People with Rare and Congenital Diseases | Observer | Hungary |