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Purpose: The primary aim was to determine Child Health Utility 9D (CHU9D) utilities from the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) for non-ambulatory children with cerebral palsy (CP).
Methods: One hundred and eight surveys completed by Australian parents/caregivers of children with CP were analysed. Spearman's coefficients were used to investigate the correlations between the two instruments. Ordinary least square, robust MM-estimator, and generalised linear models (GLM) with four combinations of families and links were developed to estimate CHU9D utilities from either the CPCHILD total score or CPCHILD domains scores. Internal validation was performed using 5-fold cross-validation and random sampling validation. The best performing algorithms were identified based on mean absolute error (MAE), concordance correlation coefficient (CCC), and the difference between predicted and observed means of CHU9D.
Results: Moderate correlations (ρ 0.4-0.6) were observed between domains of the CHU9D and CPCHILD instruments. The best performing algorithm when considering the CPCHILD total score was a generalised linear regression (GLM) Gamma family and logit link (MAE = 0.156, CCC = 0.508). Additionally, the GLM Gamma family logit link using CPCHILD comfort and emotion, quality of life, and health domain scores also performed well (MAE = 0.152, CCC = 0.552).
Conclusion: This study established algorithms for estimating CHU9D utilities from CPCHILD scores for non-ambulatory children with CP. The determined algorithms can be valuable for estimating quality-adjusted life years for cost-utility analysis when only the CPCHILD instrument is available. However, further studies with larger sample sizes and external validation are recommended to validate these findings.
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http://dx.doi.org/10.1007/s11136-024-03661-9 | DOI Listing |
J Am Soc Nephrol
September 2025
Technical Officer, Health Ethics and Governance Unit, Research for Health Department, World Health Organization.
JMIR Res Protoc
September 2025
Department of Development & Environmental Studies, Palacký University Olomouc, Olomouc, Czech Republic.
Background: Children in low- and middle-income countries face obstacles to optimal language and cognitive development due to a variety of factors related to adverse socioeconomic conditions. One of these factors is compromised caregiver-child interactions and associated pressures on parenting. Early development interventions, such as dialogic book-sharing (DBS), address this variable, with evidence from both high-income countries and urban areas of low- and middle-income countries showing that such interventions enhance caregiver-child interaction and the associated benefits for child cognitive and socioemotional development.
View Article and Find Full Text PDFJMIR Res Protoc
September 2025
Institute of Higher Education and Research in Healthcare, Faculty of Biology and Medicine, University of Lausanne, Lausanne, Switzerland.
Background: In pediatric intensive care units, pain, sedation, delirium, and iatrogenic withdrawal syndrome (IWS) must be managed as interrelated conditions. Although clinical practice guidelines (CPGs) exist, new evidence needs to be incorporated, gaps in recommendations addressed, and recommendations adapted to the European context.
Objective: This protocol describes the development of the first patient- and family-informed European guideline for managing pain, sedation, delirium, and IWS by the European Society of Paediatric and Neonatal Intensive Care.
JAMA Pediatr
September 2025
Department of Psychiatry, Vagelos College of Physicians and Surgeons, Columbia University, New York, New York.
JAMA Netw Open
September 2025
Department of Epidemiology, University of Texas Health Science Center at Houston School of Public Health, Houston.
Importance: Trisomy 13 (T13) and trisomy 18 (T18) are chromosomal abnormalities with high mortality rates in the first year of life. Understanding differences in long-term survival between children with full vs mosaic or partial trisomy is crucial for prognosis and health care planning.
Objective: To examine the differences in 10-year survival between children with full T13 and T18 vs those with mosaic or partial trisomy.