• Lars Dinkelbach, Marc Köhler, Maren Galushko, Leonie Pieper, Michaela Kuhlen, Mareike Danneberg, Oliver Dechert, Laura Trocan, and Gisela Janßen.
• Department of Pediatric Oncology (L.D., M.K., M.G., L.P., M.K., O.D., L.T., G.J.), Hematology and Clinical Immunology, Centre for Child and Adolescent Health, Medical Faculty, Heinrich-Heine-University, Duesseldorf, Germany; Department of Pediatrics III (L.D.), University Children's Hospital Essen, University of Duisburg-Essen, Essen, Germany. Electronic address: lars.dinkelbach@uk-essen.de.
• J Pain Symptom Manage. 2023 Dec 1; 66 (6): 630637.e1630-637.e1.

ContextDespite the proposed high burden of siblings of children and adolescents with life-limiting conditions receiving pediatric palliative care (PPC) at home, little is known about their psychosocial well-being.MethodsIn this prospective, cross-sectional trial siblings of patients of a large pediatric palliative home care team were asked to answer the KINDL survey of health-related quality of life, the strengths and difficulties questionnaire (SDQ) to assess problems and resources of children and adolescents as well as the LARES questionnaire, a potential tool for early screening of distress in siblings of chronically ill children. The results of the KINDL total and subdomains as well of the SDQ-subdomains were compared to recent German normative data using multiple t-tests.ResultsIn total, 44 siblings (28 female; age 7-18 years, mean 11.8 ± 3.03) of 29 families participated in this study. The subgroup which matches the age range of current normative data of 11-17 years old siblings (n = 25) reported a significant lower total quality of life as measured by KINDL in comparison to normative data. Subscale analyses revealed a significant lower physical and psychological well-being and self-esteem. Siblings of PPC patients yielded significant higher scores in the subdomain prosocial behavior compared to normative data as measured by the SDQ.ConclusionsSiblings of children receiving PPC in a home care setting are at risk for a relevant impairment of their health-related quality of life. Future studies should address the potential for possible interventions specific for this population-at-risk.Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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