A web-based psychological support program for caregivers of children with rare chronic diseases: A randomized controlled trial

Author:

Tutus Dunja1ORCID,Niemitz Mandy1,Plener Paul L.2,Fegert Jörg M.1,Lehmann Christine3,Weiss Christa3,Knaevelsrud Christine4,Biehl Lisa5,Rassenhofer Miriam1

Affiliation:

1. Ulm University Hospital: Universitatsklinikum Ulm

2. Universität Wien: Universitat Wien

3. Charite University Hospital Berlin: Charite Universitatsmedizin Berlin

4. Freie Universität Berlin: Freie Universitat Berlin

5. the German Alliance of Chronic Rare Diseases

Abstract

Abstract Background About 50% of rare diseases have symptom onset during childhood. A high level of nursing care and an often uncertain prognosis put caregivers of the affected children at high risk for psychological distress. At the same time, their caregivers have limited access to appropriate psychological care. Aim of this study was to evaluate a web-based psychological support program for caregivers of children with chronic rare diseases (WEP-CARE). Methods German-speaking parents (recruited between May 2016 and March 2018) caring for children aged 0–25 years with a rare disease, showing clinically relevant anxiety symptoms, were assigned to either WEP-CARE (n = 38) or a waitlist (n = 36) condition within a randomized controlled trial. Primary outcome measure was parental anxiety, assessed with the Generalized Anxiety Disorder Questionnaire (GAD-7). Secondary outcomes were: fear of disease progression, depression, coping, quality of life and user satisfaction. The group differences were tested through repeated-measures analyses of variance. The WEP-CARE group was additionally followed up three months after the treatment. Results A significant time-group interaction was found for anxiety (F(1,35) = 6.13, p = .016), fear of disease progression (F(1,331) = 18.23, p < .001), depression (F(1,74) = 10.79, p = .002) and coping (F(1,233) = 7.02, p = .010), suggesting superiority of the WEP-CARE group. Sustainability of the treatment gains regarding anxiety, fear of disease progression and coping was confirmed at the 6-month follow-up assessment (p < .01). A significant interaction effect could not be found for quality of life (F(1,2) = .016; p < .899). Both, participating parents and therapists were satisfied with WEP-CARE. Conclusions Our results underline efficacy and feasibility of WEP-CARE for parents of children with various rare diseases.

Publisher

Research Square Platform LLC

Reference42 articles.

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2. European Medicines Agency [EMA]. Medicines for rare diseases. 2021. https://www.ema.europa.eu/en/human-regulatory/overview/orphan-designation-overview. Accessed 08 September 2022.

3. De Vrueh R, Baekelandt ERF, De Haan JMH. Background paper 6.19 rare diseases. Geneva: World Health Organization; 2013.

4. EURORDIS-Rare Diseases Europe. What is a rare disease? 2020. http://www.eurordis.org/about-rare-diseases. Accessed 08 September 2022.

5. Eidt D, Frank M, Reimann A, Wagner TOF, Mittendorf T, Graf von der Schulenburg. J-M. Maßnahmen zur Verbesserung der gesundheitlichen Situation von Menschen mit seltenen Erkrankungen in Deutschland. 2009. https://www.bundesgesundheitsministerium.de/fileadmin/Dateien/5_Publikationen/Praevention/Berichte/110516_Forschungsbericht_Seltene_Krankheiten.pdf. Accessed 08 September 2022.

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