ArticleBMJ open2021
Acceptance and commitment therapy meets peer-support. Development of a supportive self-care intervention for patients with rare diseases: a multistage development process.
Article in BMJ open, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed, 7 citations in OpenAlex.
- Effect of group online-based peer support intervention on psychological distress of adolescent and young adult cancer patients: a randomized controlled trial.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Trial
- The Effect of a Group-Based Mindfulness and Acceptance Training on Psychological Flexibility and Adherence to Antiretroviral Therapy Among Adolescents in Uganda: An Open-Label Randomized Trial.Journal of the International Association of Providers of AIDS CareTrial
- Article
- Psychosocial observations in ocular genetics consultations: from genetic diagnosis to rehabilitation.International ophthalmology · 2025Article
- Criteria to evaluate unmet health-related needs of persons living with rare diseases and their caregivers: rapid literature review and stakeholder consultations.Orphanet journal of rare diseases · 2025Review
- "I just wanted to speak to someone- and there was no one…": using Burden of Treatment Theory to understand the impact of a novel ATMP on early recipients.Orphanet journal of rare diseases · 2023Article
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Authors and funding
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveWe aimed at developing a patient-centred self-help programme, tailored to the needs of patients with rare chronic diseases.
designMultistage, multimethod development process including a survey with validated self-report scales and open-ended questions (phase 1) and focus groups (phase 2) for needs assessment and, consolidating the first phases and the literature, the intervention development (phase 3).
settingPhase 1: nationwide online survey in Germany, phase 2: four separate and diagnostically homogeneous focus groups. The focus groups took place at a university medical centre in Germany.
participantsTarget group were patients with rare diseases that occur at a prevalence <1:2000. Phase 1: n=300 participants with different rare diseases. Phase 2: Individuals with neurofibromatosis type 1 (n=4), primary sclerosing cholangitis (n=5), pulmonary arterial hypertension (n=4) and Marfan syndrome (n=5).
resultsThe central results of phases 1 and 2 were requests for more information about the disease and contact with other affected persons. Patients also expressed support needs in dealing with difficult emotions and identified acceptance of the disease as a turning point for quality of life. In phase 3, we identified acceptance and commitment therapy (ACT) as a suitable therapeutic approach and determined details about implementation and execution of self-management programmes. A 6-week self-help concept led by peer counsellors was developed, which includes disease-specific information and ACT-based exercises.
conclusionBased on a multistage needs assessment, we developed a peer-guided self-help intervention for patients with rare chronic diseases. Combining self-management, peer-counselling and ACT may help living with a rare condition. Further research needs to test the programme's efficacy. TRIAL REGISTRATION NUMBER: ISRCTN13738704.
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