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Health-Related Quality of Life in Children With Sickle Cell Disease Using the Child Health Questionnaire
Affiliation:1. Department of Urology, Children’s Hospital of Orange County, Orange, California;2. School of Medicine, University of California, Irvine, Irvine, California;1. Department of Community Health Sciences, University of Calgary, Room 3C62, Health Research Innovation Centre, 3280 Hospital Drive NW, Calgary, Alberta T2N 4Z6, Canada;2. Li Ka Shing Knowledge Institute of St. Michael''s Hospital, 209 Victoria Street, Room 312, Toronto, Ontario M5B 1T8, Canada;3. Institute of Health Policy, Management and Evaluation, University of Toronto, 209 Victoria Street, Room 312, Toronto, Ontario M5B 1T8, Canada;4. DeGroote School of Business, McMaster University, 1280 Main Street West, Hamilton, Ontario L8S 4M4, Canada;5. University of Toronto, Sunnybrook Health Sciences Centre, 2075 Bayview Avenue, Toronto, Ontario M4N 3M5, Canada;6. Department of Medicine, University of Toronto, 610 University Avenue, Toronto, Ontario M5G 2M9, Canada;7. Princess Margaret Cancer Centre, 610 University Avenue, Toronto, Ontario M5G 2M9, Canada;8. Department of Community Health Sciences, University of Calgary, McMaster University, Room 3C56, Health Research Innovation Centre, 3280 Hospital Drive NW, Calgary, Alberta T2N 4Z6, Canada
Abstract:IntroductionThis study sought to determine if changes in parent-reported health-related quality of life (HRQOL) in children with sickle cell disease (SCD-SS) occurred after participation in a nutritional supplementation study and to compare HRQOL responses with normative scores from non-White children.MethodParents of children with SCD-SS between the ages of 5 and 13 years completed the Child Health Questionnaire (CHQ-PF50) at baseline and at 12 months.ResultsFor the 47 children (8.6 ± 2.4 yrs, 43% female), baseline Child Health Questionnaire scale scores were significantly lower than normative scale scores for parental emotional impact, general health, and overall physical health, but they were higher for mental health. After the nutritional supplementation study, overall physical health and parental emotional impact improved to normative levels. Furthermore, physical role functioning significantly improved.DiscussionParticipation in a nutritional study had a positive impact on parent-reported HRQOL physical scores in children with SCD-SS. More research is necessary to develop care providers' awareness and adequate HRQOL interventions for this population.
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