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Parental Report of Health-Related Quality of Life in Children with Sickle Cell Disease
Abstract
Health-related quality of life (HRQOL) of youths with sickle cell disease (SCD) has not been described, despite the psychosocial and physical consequences associated with the disease. We compared the HRQOL of 58 children with SCD to a demographically similar sample of 120 healthy children and examined predictors of HRQOL. Child HRQOL was assessed using the Child Health Questionnaire--Parent Report Form. Review of medical charts of children with SCD provided data on disease-related complications. Results demonstrated that caregivers of children with SCD reported that their children had more limited physical, psychological, and social well-being than healthy children. Older child age, female gender, and more disease-related complications predicted limitations in the physical health of children with SCD. The findings indicated that SCD significantly affects the HRQOL of youths. Certain subgroups of patients (e.g., children with more disease complications) may benefit from interventions specifically designed to improve their physical functioning.
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Pain has been demonstrated to be associated with a range of psychosocial problems, including school absences and diminished time with peers.
“Pain has been demonstrated to be associated with a range of psychosocial problems, including school absences and diminished time with peers (12).”
From Ecological system influences in the treatment of pediatric chronic pain (2012) · cites this paper as [12]
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References 31 · Cited by 151
Research works printed but not linked: 11
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Metadata
- Authors
- Palermo, T. M., Schwartz, L., Drotar, D., & McGowan, K.
- Affiliations
- Rainbow Babies & Children's Hospital (US)
- Case Western Reserve University (US)
- Corresponding author
- Palermo, Tonya Mizell
- Venue
- Journal of Behavioral Medicine
- Published
- 2002-06
- Volume
- 25
- Issue
- 3
- Pages
- 269-283
- ISSN
- 0160-7715 (ISSN-L)
- 1573-3521
- OpenAlex
- W1521399912
- Cited by
- 151
- References
- 31
- Citations by year
- 2026: 1 · 2025: 6 · 2024: 3 · 2023: 3 · 2022: 11 · 2021: 11 · 2020: 6 · 2019: 5 · 2018: 6 · 2017: 5 · 2016: 9 · 2015: 5 · 2014: 10 · 2013: 9 · 2012: 10
- FWCI
- 1.77
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- Locations
- Journal of Behavioral Medicine (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Institutes of Health
- National Heart, Lung, and Blood Institute (R01HL046380, HL 46380)
- National Institute of Mental Health (K23 MH01837, K23MH001837)
- Topics
- Health Sciences › Medicine › Genetics (clinical) › Hemoglobinopathies and Related Disorders
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Adolescent and Pediatric Healthcare
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Pediatric Pain Management Techniques
- Keywords
- sickle cell disease, health-related quality of life, children, parent report, Child Health Questionnaire, physical function, disease complications, psychosocial well-being, social well-being, predictors of quality of life
- MeSH terms
- Adolescent, Anemia, Sickle Cell, Child, Child, Preschool, Data Collection, Female, Health Status Indicators, Humans, Male, Parents, Quality of Life, Surveys and Questionnaires
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