rare diseases
Conditions
Interventions
Group 1: The face-to-face intervention CARE-FAM is a family-based intervention for the diagnostic, early detection and early treatment of mental health issues of children affected by rare diseases, th
Sponsors
Universitätsklinikum Hamburg-Eppendorf Klinik für Kinder- und Jugendpsychiatrie, -psychotherapie und -psychosomatik
Eligibility
Sex/Gender
All
Age
0 Years to 21 Years
Inclusion criteria
Inclusion criteria: 1. Families with at least one child between the age of 0 and 21 years with a rare disease or with a suspected rare disease. 2. Consent to participate in the study. 3. Sufficient knowledge of the German language of parents and children. 4. Insured at the participating insurance companies.
Exclusion criteria
Exclusion criteria: Severe psychiatric disorders and impairments with acute symptoms such as suicidal tendencies, severe depression, addictions, acute psychotic symptoms etc., which will not be sufficiently supplied by this new low-frequency intervention. Children and parents with acute treatment demand in the control group will be placed at psychotherapists. Nevertheless, they stay in the control group
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Proportion of parents without mental abnormities among the parents with initial mental abnormities, assessed by the external, independent “Structured clinical interview for DSM-IV” (SCID; Wittchen, Zaudig & Fydrich,1997) 18 months after randomization. | — |
Secondary
| Measure | Time frame |
|---|---|
| Sociodemographic information of the parents, assessed from the perspective of the parents by ad-hoc items at the beginning of the study. Health-related quality of life of the parents, assessed from the perspective of the parents by the EQ-5D (Brooks, Rabin & Charro, 2003; Hinz, Klaiberg, Brahler & Konig, 2006), by the „Ulmer Lebensqualitäts-inventar für Eltern chronisch kranker Kinder“ (ULQIE; Goldbeck & Storck, 2002) and by the “Short Form 12” (SF-12; Bullinger & Kirchberger, 1998) at the beginning of the study as well as six, 12 and 18 months after the randomization. Health-related quality of life of the chronically-ill children/adolescents, assessed from the perspective of the child/adolescent (from 10 years of age) and from the perspective of the parents by the „Disabkids Chronic Generic Measure“ (DCGM-37; Bullinger, Schmidt, Petersen & The DISABKIDS Group, 2002) at the beginning of the study as well as six, 12 and 18 months after the randomization. Health-related quality of life of the chronically-ill children/adolescents and of the siblings, assessed from the perspective of the child/adolescent (from 10 years of age) and from the perspective of the parents by the Kidscreen-27 (The KIDSCREEN Group Europe, 2006) at the beginning of the study as well as six, 12 and 18 months after the randomization. Mental health of the parents, assessed from the perspective of the parents by the “Patient Health Questionnaire” (PHQ; PHQ; Löwe, Spitzer, Zipfel & Herzog, 2002) and by the corresponding “GAD-7” as well as by the “Brief Symptom Inventory“ (BSI; BSI; Franke, 2000) at the beginning of the study as well as six, 12 and 18 months after the randomization. Mental health of the chronically-ill children/adolescents and the siblings, assessed from the perspective of the parents and from the perspective of the children/adolescents (from 10 years of age) by an external independent interview „Diagnostic Interview Kiddie-Sads-Present and Lifetime Version” (Kiddie-SADS-PL; Delmo, | — |
Countries
Germany
Contacts
Public ContactBonnie Filter
Universitätsklinikum Hamburg-Eppendorf Klinik für Kinder- und Jugendpsychiatrie, -psychotherapie und -psychosomatik
Outcome results
None listed