Patients for patients – qualified peer-counselling and self-management for patients with rare chronic diseases

Not Applicable

• Conditions: eurofibromatosis type 1, Marfan Syndrome, primary sclerosing cholangitis (PSC), pulmonary arterial hypertension (PAH); Genetic Diseases

• Registration Number: ISRCTN13738704
• Lead Sponsor: niversity Medical Center Hamburg- Eppendorf | UKE

Brief Summary

2021 Results article in https://pubmed.ncbi.nlm.nih.gov/33625502/ results (added 25/02/2021)

Detailed Description

Not available

Study Timeline

• Results First Posted: 1900-01-01
• Study Start: 2017-10-20
• Study Completion: 2018-10-31
• Last Update Posted: 21 July 2021

Recruitment & Eligibility

• Sex: All
• Target Recruitment: 89

Inclusion Criteria

1. Diagnosis of one of four specific rare chronic conditions (Neurofibromatosis type 1, Marfan syndrome, primary sclerosing cholangitis, pulmonary arterial hypertension) given by a clinician
2. Limited functionality caused by the disease
3. Minimum age of 16 years
4. Willingness to participate in all parts of the intervention including the self-management manual, the peer counselling as well as willingness to answer to questionnaires
5. Sufficient German language skills

Exclusion Criteria

1. Life threatening state of health
2. Acute mental or physical burden requiring an immediate treatment
3. Acute suicidality
4. Current psychotherapeutic, psychosomatic or psychiatric treatment
5. Severe cognitive, auditory or visual impairment
6. Inability to answer study questionnaires

Study & Design

• Study Type: Interventional
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Subscale Acceptance of the Illness Cognition Questionaire (ICQ; Evers, Kraaimaat et al. 2001). The instrument assesses ways of cognitively evaluating the aversive character of a chronic illness on the scales helplessness, acceptance, and perceived benefits. Timepoints: pre-assessment (before the intervention), post-assessment (directly after the intervention) and follow-up assessment (6 months after the intervention)