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 Intervention for Affected Families (CARE-FAM-NET).

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Title: 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 Intervention for Affected Families (CARE-FAM-NET).
Authors: Steinberg A; Department of Psychiatry and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Boettcher J; Department of Child and Adolescent Psychiatry, Psychosomatics and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Leidger A; Department of Psychiatry and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Muntau AC; University Children's Hospital, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.; German Center for Child and Adolescent Health (DZKJ), Hamburg, Germany., Denecke J; University Children's Hospital, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Kaiser N; University Children's Hospital, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Daubmann A; Institute of Medical Biometry and Epidemiology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Zapf A; Institute of Medical Biometry and Epidemiology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Wegscheider K; Institute of Medical Biometry and Epidemiology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Ozga AK; Institute of Medical Biometry and Epidemiology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Suling AI; Institute of Medical Biometry and Epidemiology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Bullinger M; Institute and Polyclinic for Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Quitmann J; Institute and Polyclinic for Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Dirmaier J; Institute and Polyclinic for Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Witt S; Institute and Polyclinic for Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Rezvani F; Institute and Polyclinic for Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Mundlos C; ACHSE e.V.: Alliance of Chronic Rare Diseases, Berlin, Germany., Biehl L; ACHSE e.V.: Alliance of Chronic Rare Diseases, Berlin, Germany., Rassenhofer M; Child and Adolescent Psychotherapy, Ulm University Hospital, Ulm, Germany., Fegert JM; Child and Adolescent Psychotherapy, Ulm University Hospital, Ulm, Germany., Tutus D; Child and Adolescent Psychotherapy, Ulm University Hospital, Ulm, Germany., Willms G; Institute for Applied Quality Promotion and Research in Healthcare GmbH, aQua Institute, Göttingen, Germany., Zeidler J; Center for Health Economics Research Hannover (CHERH), Leibniz Universität Hannover, Hanover, Germany., Pardey N; Center for Health Economics Research Hannover (CHERH), Leibniz Universität Hannover, Hanover, Germany., von der Schulenburg JG; Center for Health Economics Research Hannover (CHERH), Leibniz Universität Hannover, Hanover, Germany., Wiegand-Grefe S; Department of Psychiatry and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.; German Center for Child and Adolescent Health (DZKJ), Hamburg, Germany.
Source: Family process [Fam Process] 2025 Jun; Vol. 64 (2), pp. e70041.
Publication Type: Journal Article; Randomized Controlled Trial; Multicenter Study
Journal Info: Publisher: Family Process Country of Publication: United States NLM ID: 0400666 Publication Model: Print Cited Medium: Internet ISSN: 1545-5300 (Electronic) Linking ISSN: 00147370 NLM ISO Abbreviation: Fam Process Subsets: MEDLINE
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  Data: 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 Intervention for Affected Families (CARE-FAM-NET).
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