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Informant discrepancy in perceptions of sickle cell disease severity
Mark Connelly1, Janelle L Wagner, Ronald T Brown
1Medical University of South Carolina (MUSC), National Crime Victims Research and Treatment Center, P.O. Box 250852, 165 Cannon Street, Room 310, Charleston, SC 29425, USA. connelma@musc.edu
Journal of Pediatric Psychology
|June 10, 2005
Summary
Informants like children, caregivers, and physicians perceive chronic disease severity differently. Caregiver adjustment and objective disease markers explain these perception differences in pediatric sickle cell disease.
Area of Science:
- Pediatric Hematology
- Psychosocial Aspects of Chronic Illness
Background:
- Chronic diseases like sickle cell disease significantly impact children and their families.
- Understanding perception differences in disease severity is crucial for comprehensive care.
Purpose of the Study:
- To investigate discrepancies in perceived chronic disease severity among children, caregivers, and physicians.
- To determine if objective disease severity indices and caregiver adjustment explain these perceptual differences.
Main Methods:
- A cohort of 58 children and adolescents (8-18 years) with sickle cell disease participated.
- Data collected included perceptions of disease severity, caregiver adjustment, and biological markers of disease severity.
Main Results:
- Significant differences were found in how informants perceived disease severity.
- Caregiver psychological adjustment and objective biological markers of disease severity were significant predictors of these perception variations.
Conclusions:
- Perceptions of chronic disease severity are multifaceted and influenced by informant perspective.
- Caregiver adjustment and objective disease indicators play a key role in shaping these perceptions, impacting clinical management.