psychosocial care, children and adolescents, rare diseases, families

Principal investigator (PI): Prof. Dr. Silke Wiegand-Grefe, Medical Center Hamburg-Eppendorf (UKE): Department of Child and Adolescent Psychiatry and Psychotherapy

Consortium partner: University Hospital Ulm: Department of Child and Adolescent Psychiatry/Psychotherapy, providing new psychosocial types of care (TOC): WEP-CARE (A web-based psychological support program for caregivers of children with rare chronic diseases).

The project CARE-FAM-NET was conceptualized and applied for by Prof. Dr. Silke Wiegand-Grefe and Prof. Dr. Lutz Goldbeck. Since Prof. Dr. Lutz Goldbeck’s death, Prof. Dr. Jörg Fegert and Prof. Dr. Miriam Rassenhofer have assumed leadership of the subproject.

1^st October 2018 to 30^th September 2022

According to estimates, there are about two million children and adolescents in Germany living with a RD. Often, disease management requires a high degree of support and care by parents and siblings. This leads to high demands on the family which is often severely burdened by anxiety, insecurities and worries regarding the diseased child. According to studies, between 30% and 40% of mothers show clinically relevant levels of anxiety and depression.

The main goals of CARE-FAM-NET are the implementation, accompanying evaluation and transfer of two psychosocial TOC  (CARE-FAM-NET and WEP-CARE) for children with RD, their siblings and their parents in 20 locations. The existing conventional care structures are being used, connected to CARE-FAM-NET and expanded by the TOC. In case of a proven medical and health economic effectiveness, the TOC are going to be implemented into regular care.

Project description

The CARE-FAM-NET project was categorized into 2 overlapping subprojects:

Subproject 1: Implementation of a systematic screening for the early detection of psychosocial support needs of affected families, and implementation of both TOC (CARE-FAM, WEP-CARE) at 20 locations. We plan on including N=1000 families, each with at least one child between 0-21 years with a RD, in the study.  

Subproject 2: Accompanying evaluation including a cost-benefit-analysis, external quality management and optimization of access paths.

Both TOC are being evaluated together with regards to health economical and medical criteria in a multicenter randomized controlled trial with a two-factor 4-group design (CARE-FAM, WEP-CARE, both interventions, treatment as usual (TAU)). Primary outcome is children, sibling and parents mental health across 4 measurement time points (every six months).

Fidika, A., Herle, M., Lehmann, C., Weiss, C., Knaevelsrud, C., & Goldbeck, L. (2015). A web-based psychological support program for caregivers of children with cystic fibrosis: a pilot study. Health and Quality of Life Outcomes, 13(1), 11.

Tutus, D., Plener, P. L., Niemitz, M. (2018). Qualitätskriterien internetbasierter kognitiv-behavioraler Interventionen für Kinder und Jugendliche sowie deren Eltern – Ein systematisches Review. Zeitschrift für Kinder- und Jugendpsychiatrie und Psychotherapie, 1–17.

Tutus, D., Plener, P. L., Niemitz, M. (2018). Ulmer Onlineklinik – eine Plattform für internetbasierte Psychodiagnostik und psychologische Online-Interventionsprogramme. PiD - Psychotherapie im Dialog, 19.

Tutus, D., Niemitz, M., Fegert, J. M., & Rassenhofer, M. (2021). E-Mental-Health-Angebote für Eltern eines Kindes mit einer seltenen chronischen Erkrankung: Interventionelle Ansätze zur Reduktion der psychischen Belastung [E-mental health options for parents of a child with a rare chronic disease: Interventional approaches to reduction of psychological stress]. Monatsschr Kinderheilkd.

Innovation Committee at the Federal Joint Committee (GB-A)