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

INTERVENTION: Study coordination is single centered, participants receive their Intervention at home and by phone and will be recruited from all over Germany. Participants are randomly assigned to either condition after providing informed consent. Unmasked random assignment to intervention or waiting‐control group. The 6‐week intervention combines self‐management and peer‐counselling. Participants receive a self‐management manual including 6 modules on the following topics: Disease‐specific information, dealing with negative emotions, accepting negative thoughts and emotions, values and value‐based goals. The information module is the only disease‐specific module. All other chapters are generic and do not address a specific condition. Additionally to the manual, participants receive weekly telephone support by a peer counsellor (max. 30 minutes). During the phone calls the recipients of the questions are asked whether working on the current chapter worked and which difficulties arose. The recipients have the opportunity to ask questions regarding the content and process. Peer‐counsellors are trained before the intervention starts. They further receive supervision provided by a medical psychotherapist in order to be sufficiently supported during their work. Peer‐counsellors further receive consulting guidelines. The control group receives care as usual during the study. As a waiting control group participants receive the intervention after the trial has ended. Data assessment will take place before, directly after as well as six months after the intervention has ended. Assessed variables include patient global impression of change, coping mechanisms, quality of life, illness‐perception, illness‐related fears and illness‐related cognitions, psychopathology, social support and optimism. Further, acceptance and subjective usefulness of the intervention will be assessed after the intervention. CONDITION: Neurofibromatosis type 1, Marfan Syndrome, primary sclerosing cholangitis (PSC), pulmonary arterial hypertension (PAH) ; Genetic Diseases PRIMARY OUTCOME: 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) 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 SECONDARY OUTCOME: 1. Patient's belief about the efficacy of treatment, assessed using Patient Global Impression of Change (PGIC) at post and follow‐up assessment ; 2. Coping mechanisms, assessed using the Health Education Impact Questionnaire (HeiQ; Schuler, Musekamp et al., 2013) at pre, post and follow‐up assessment; 3. Illness perceptions, assessed using the Illness Perception Questionnaire (IPQ‐R; Glattacker, Bengel et al., 2009) at pre, post and follow‐up assessment; 4. Health‐related quality of life, assessed using the 12‐Item Short‐Form Health Survey (SF‐12; Ware, Kosinski et al., 1996) at pre, post and follow‐up assessment; 5. Presence and severity of symptoms of depression, assessed using the Patient Health Questionnaire 9‐item depression scale (PHQ‐9; Kroenke, Spitzer et al., 2001) at pre, post and follow‐up assessment; 6. Somatic symptom severity, assessed using Patient Health Questionnaire 15‐item somatic scale (PHQ‐15; Kroenke, Spitzer et al., 2002) at pre, post and follow‐up assessment; 7. The presence and severity of anxiety symptoms, assessed using the Patient Health Questionnaire 7‐item anxiety scale (GAD‐7; Löwe, Decker et al., 2008) at pre, post and follow‐up assessment; 8. Perceived social support, assessed using Social Support Questionnaire – Fragebogen zur sozialen Unterstützung (F‐Sozu; Fydrich, Sommer et al., 2009) at pre, post and follow‐up assessment; ; Other measures: ; 1. Client Sociodemographic and Service Receipt Inventory (CSSRI) – adapted version, used at pre assessment; 2. Acceptance and perceived usefulness of the intervention and the specific modules, assessed using self‐generated measure at post assessment; 3. The perceived relationship with the peer consultant, assessed using self‐generated measure at post assessment; 4. Subjectively perceived goal achievement, assessed using self‐generated measure at post assessment; 5. The perceived quality of the peer‐counselling sessions from the perspective of the peer‐counsellor, assessed using self‐generated measure at post assessment; 6. Whether expectations of peer‐counsellors regarding the intervention have been met, assessed using self‐generated measure at post assessment; 7. Sociodemographic variables, assessed at pre assessment; 8. Helplessness and perceived benefits, assessed using the Illness Cognition Questionnaire (ICQ; Evers, Kraaimaat et al. 2001) at pre, post and follow‐up assessment; 9. Fear of the progression of the illness and future worries concerning the illness, assessed using Fear of Progression Questionnaire ‐ Short‐Form (PA‐F‐KF; Mehnert, Herschbach et al, 2006) at pre, post and follow‐up assessment; 10. Optimism and pessimism, assessed using LOT‐R (Glaesmer, Hoyer et al., 2008) at pre, post and follow‐up assessment; 11. General self‐efficacy, assessed using Self‐efficacy Scale – Allgemeine Selbstwirksamkeitserwartung (SWE; Jerusalem & Schwarzer, 1999) at pre, post and follow‐up assessment