Article
Feasibility and acceptance of KIDSCREEN-52: A comprehensive screening tool for unmet needs in children with inflammatory diseases
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Authors
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Özlem Satirer
- Division of Pediatric Rheumatology, Department of Pediatrics and Autoinflammation reference Center Tübingen (arcT), University Hospital Tübingen, Tübingen, Germany
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Gabi Erbis
- Division of Pediatric Rheumatology, Department of Pediatrics and Autoinflammation reference Center Tübingen (arcT), University Hospital Tübingen, Tübingen, Germany
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Verena Heck
- Division of Pediatric Rheumatology, Department of Pediatrics and Autoinflammation reference Center Tübingen (arcT), University Hospital Tübingen, Tübingen, Germany
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Tatjana Welzel
- Pediatric Rheumatology, University Children’s Hospital Basel (UKBB), University of Basel, Basel, Switzerland
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Christiane Reiser
- Division of Pediatric Rheumatology, Department of Pediatrics and Autoinflammation reference Center Tübingen (arcT), University Hospital Tübingen, Tübingen, Germany
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Anne-Kathrin Gellner
- Department of Psychiatry and Psychotherapy at Bonn University Hospital, Bonn, Germany
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Susanne M. Benseler
- Rheumatology, Department of Pediatrics, Alberta Children’s Hospital (ACH), ACH Research Institute, University of Calgary, Calgary, AB, Canada.; Children’s Health Ireland, Dublin, Ireland
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Jasmin B. Kümmerle-Deschner
- Division of Pediatric Rheumatology, Department of Pediatrics and Autoinflammation reference Center Tübingen (arcT), University Hospital Tübingen, Tübingen, Germany
| Published: | September 18, 2024 |
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Outline
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Introduction: Children with rare and chronic diseases often experience multiple psychosocial challenges. Identifying the unmet needs of these children is crucial to deploy targeted support and allocate resources. Comprehensive screening tools are urgently needed. The aim of the study was to evaluate the feasibility and acceptance of the comprehensive KIDSCREEN-52 tool for identifying the unmet needs in children diagnosed with inflammatory diseases and their families.
Methods: A prospective, single-center study of consecutive pediatric patients ages 8–18 years with inflammatory diseases and their caregivers was performed. The comprehensive KIDSCREEN-52 tool, available in 13 languages, was utilized; 52 items assessed the dimensions of health-related quality of life (HRQoL).
Analysis:
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- HRQoL – data obtained from KIDSCREEN self-report and caregiver proxy were equated with appropriate normative data sets and compared within families
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- Feasibility and acceptance – completion rate, time to completion and, self-developed acceptance questionnaire
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- Comparison of self-reported psychosocial burden of autoinflammatory versus rheumatic diseases.
Results: A total of 106 participants were included, 53 pediatric patients and their 53 caregivers. The patients were 35 females and 18 males with a median age of 16 years (9–18). Inflammatory diagnoses: 25 (49%) with autoinflammatory and 26 (51%) with rheumatic diseases.
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- Mean values obtained from proxy and self-reports were consistent with the German normative dataset across all domains. Comparison self-report/proxy: Differences were observed in the domains “bullying” (mean self-reports: 52.5 vs proxy: 52.7) and “financial resources” (mean self-reports: 57.8 vs proxy: 59.4). Similarities were seen for the other eight domains within families.
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- Feasibility and acceptance: Overall completion rate was 75%; the mean completion time was 17 min (10–25). Both parents and children expressed substantial acceptance regarding the clarity, relevance, and adequacy of the questionnaire.
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- Compared to autoinflammation the psychosocial burden was higher in patients with rheumatic diseases most significantly in the domains of Parent Relations and Home Life, School Environment and Self-Perception.
Conclusion: The KIDSCREEN-52 tool shows promise as a feasible and accepted screening tool for identifying the unmet needs in children with inflammatory diseases. The short and comprehensive tool available in multiple languages provides a unique opportunity to deploy strategies for improving the HRQoL in routine care.
Disclosures: No conflicts of interest.
References
- 1.
- Erbis G, Schmidt K, Hansmann S, Sergiichuk T, Michler C, Kuemmerle-Deschner JB, Benseler SM. Living with autoinflammatory diseases: identifying unmet needs of children, adolescents and adults. Pediatr Rheumatol Online J. 2018 Dec 20;16(1):81. DOI: 10.1186/s12969-018-0300-7
- 2.
- Baumbusch J, Mayer S, Sloan-Yip I. Alone in a Crowd? Parents of Children with Rare Diseases' Experiences of Navigating the Healthcare System. J Genet Couns. 2018 Aug 21. DOI: 10.1007/s10897-018-0294-9
