Evaluation of the Health‐Related Quality of Life and Mental Health of Parents With Children and Adolescents With a Rare Disease Based on the Results of a Randomized Controlled Trial to Investigate a Family‐Based Intervention and an Online Interventio

Parents caring for children with rare diseases are more impaired regarding health-related quality of life (HRQoL) and mental health than healthy controls and norm data. To address the research gap in psychological care for these parents, this study evaluates the effectiveness of two family-based interventions. The children affected by rare disease and their families network (CARE-FAM-NET) study is a multicenter randomized controlled 2 × 2 factorial trial for affected families with children (0-21 years). This paper focuses on evaluating the impact of two interventions, one face-to-face (CARE-FAM) and one online (WEP-CARE), on the HRQoL and mental health of parents. One thousand, one hundred sixty-eight parents participated: TAU = 291, CARE-FAM = 296, WEP-CARE = 300, and CARE-FAM + WEP-CARE combined = 281. Data were collected at four time points over a period of 18 months using standardized questionnaires. The results had to be interpreted exploratively. The results indicate that there are no clinically relevant differences in the parents' HRQoL and mental health between the treatment groups. However, time-dependent differences in the intervention effects for WEP-CARE were observed. Although the results did not show clear relevant differences between conditions, trends in improvement in HrQoL and mental health were identified. CARE-FAM shows a greater reduction in parental distress and WEP-CARE shows a greater distortion of distress, particularly at T3 and T4. Given the exploratory nature of this study, it highlights the urgent need for further confirmatory research in this area.

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Journal
Family Process
Published
2025-05-15
DOI
https://doi.org/10.1111/famp.70041
Citations
3
Primary Topic
BRCA gene mutations in cancer
Type
article
Field-Weighted Citation Impact
5.45

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article

Evaluation of the Health‐Related Quality of Life and Mental Health of Parents With Children and Adolescents With a Rare Disease Based on the Results of a Randomized Controlled Trial to Investigate a Family‐Based Intervention and an Online Interventio

Anna Leidger, Ania C. Muntau, Anna Suling, Lisa Biehl et al.
3 citations
Family Process
BRCA gene mutations in cancer
5.45
article

Evaluation of the Health‐Related Quality of Life and Mental Health of Parents With Children and Adolescents With a Rare Disease Based on the Results of a Randomized Controlled Trial to Investigate a Family‐Based Intervention and an Online Interventio

Anna Leidger, Ania C. Muntau, Anna Suling, Lisa Biehl, Gerald Willms, Jonas Denecke, Johann‐Matthias Graf von der Schulenburg, Monika Bullinger, Farhad Rezvani, Ann‐Kathrin Ozga, Karl Wegscheider, Miriam Rassenhofer, Nicole Kaiser, Anne Daubmann, Antonia Zapf, Johannes Boettcher, Jörg Dirmaier, Stefanie Witt, Dunja Tutus, Christine Mundlos, Julia Quitmann, Nicolas Pardey, Jörg Michael Fegert, Jan Zeidler, Silke Wiegand‐Grefe, Annie G. Steinberg
article en
3 citations

Abstract

Parents caring for children with rare diseases are more impaired regarding health-related quality of life (HRQoL) and mental health than healthy controls and norm data. To address the research gap in psychological care for these parents, this study evaluates the effectiveness of two family-based interventions. The children affected by rare disease and their families network (CARE-FAM-NET) study is a multicenter randomized controlled 2 × 2 factorial trial for affected families with children (0-21 years). This paper focuses on evaluating the impact of two interventions, one face-to-face (CARE-FAM) and one online (WEP-CARE), on the HRQoL and mental health of parents. One thousand, one hundred sixty-eight parents participated: TAU = 291, CARE-FAM = 296, WEP-CARE = 300, and CARE-FAM + WEP-CARE combined = 281. Data were collected at four time points over a period of 18 months using standardized questionnaires. The results had to be interpreted exploratively. The results indicate that there are no clinically relevant differences in the parents' HRQoL and mental health between the treatment groups. However, time-dependent differences in the intervention effects for WEP-CARE were observed. Although the results did not show clear relevant differences between conditions, trends in improvement in HrQoL and mental health were identified. CARE-FAM shows a greater reduction in parental distress and WEP-CARE shows a greater distortion of distress, particularly at T3 and T4. Given the exploratory nature of this study, it highlights the urgent need for further confirmatory research in this area.

Family ProcessVol. 64(2)
Leibniz University Hannover (DE), Universität Hamburg (DE), University Medical Center Hamburg-Eppendorf (DE), University Hospital Ulm (DE)
Universitätsklinikum Essen, Universitätsmedizin Göttingen, Albert-Ludwigs-Universität Freiburg, Universität des Saarlandes, Medizinischen Hochschule Hannover, Universitätsklinikum Jena, Universitätsklinikum Köln, Universität Rostock, Gemeinsame Bundesausschuss, Universitätsklinikum Hamburg-Eppendorf
Openalex Percentile: Top 5%
BRCA gene mutations in cancer
5.45
DOIOpen Access PDFOpenAlex
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