Neurofibromatosis type 1, Marfan Syndrome, primary sclerosing cholangitis (PSC), pulmonary arterial hypertension (PAH) Genetic Diseases
Conditions
Interventions
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
Sponsors
University Medical Center Hamburg- Eppendorf | UKE
Eligibility
Sex/Gender
All
Inclusion criteria
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
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
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 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) | — |
Secondary
| Measure | Time frame |
|---|---|
| 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 usi | — |
Countries
Germany
Outcome results
None listed