ArticleAcademic pediatrics
Family Caregivers of Children With Medical Complexity: Changes in Health-Related Quality of Life and Experiences of Care Coordination.
Article in Academic pediatrics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
5 citing papers in PubMed.
- Advances in Efforts to Enhance Care Coordination and Wellbeing Among Family Caregivers of Children With Medical Complexity.Academic pediatrics · 2026Review
- Associations of Environmental Modifications and Collaborative Care Environments with Positive Health in Families of Children with Medical Complexity: A Secondary Analysis.Nursing reports (Pavia, Italy) · 2026Article
- Inventing inclusive care norms in the adoption of children with disabilities: coordinating routines, networks and filiation.Revista da Escola de Enfermagem da U S P · 2026Article
- A Qualitative Study of CMC Caregivers' Perspectives about their Emotional Well-Being.Journal of pain and symptom management · 2025Article
- Liveborn children with trisomy 18: A retrospective review.Paediatrics & child health · 2025Article
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
objectiveExamine the longitudinal association between family experiences of care coordination (FECC) and health-related quality of life (HR-QOL) for family caregivers of children with medical complexity (CMC).
methodsA longitudinal survey of family caregivers of CMC was completed between July 2018 and June 2020. Baseline data were collected at initial contact with a regional complex care center; follow-up data were collected 12 to 16 months later. Assessed receipt of care coordination and caregiver HR-QOL via FECC questionnaire and Center for Disease Control's HR-QOL-14 measure, respectively. Baseline and follow-up results were compared via McNemar's and Wilcoxon signed-rank tests. Relationships between changes in FECC and changes in HR-QOL were examined using multivariable logistic regression.
resultsOf 185 eligible, 136 caregivers enrolled and completed baseline surveys (74%) and 103 (76% initial sample) follow-up surveys. Caregivers reported significant improvements in 8 of 9 FECC measures after 1 year of care within a complex care center (all P < .05). In contrast, caregiver HR-QOL (general health status, unhealthy days, symptom days) remained stable over the study period (all P > .05) except for monthly days of poor sleep (baseline vs follow-up median; 16 vs 15 [P = .05]). At both timepoints, >20% participants rated their general health status as fair-to-poor, and >50% reported frequent poor sleep and fatigue. No significant associations were observed between changes in FECC and changes in HR-QOL.
conclusionsAfter receiving 1 year of care through a complex care center, CMC family caregivers report improvement in care coordination but not in HR-QOL. Caregivers' continued mentally unhealthy days and negative mental symptom days highlight the need for a directed intervention.
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