Health-Related Quality of Life in Adolescents With Chronic Illness in Jamaica: Adolescent and Parent Reports |
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| Affiliation: | 1. Department of Child and Adolescent Health, The University of the West Indies, Mona, Kingston, Jamaica;2. Caribbean Institute for Health Research-Sickle Cell Unit, The University of the West Indies, Mona, Kingston, Jamaica;1. Department of Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania;2. Department of Psychiatry and Behavioral Sciences, Boston Children''s Hospital, Boston, Massachusetts;3. Department of Psychology, University of Pittsburgh, Pittsburgh, Pennsylvania;4. Clinical and Translational Science Institute, University of Pittsburgh, Pittsburgh, Pennsylvania;5. School of Public Health, University of California, Berkeley, Berkeley, California;6. Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania;7. Department of Psychology, Florida International University, Miami, Florida;8. Department of Psychiatry, Harvard Medical School, Boston, Massachusetts;1. Population Council, Washington, District of Columbia;2. Population Council, New Delhi, India;1. PATH, Sexual and Reproductive Health Team, Seattle, Washington;2. PATH, Sexual and Reproductive Health Team, Kampala, Uganda;1. Division of Respiratory Diseases (DVD), National Center for Immunization and Respiratory Diseases (NCIRD), Centers for Disease Control and Prevention (CDC), Atlanta, Georgia;2. Division of STD Prevention (DSTDP), National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP), Centers for Disease Control and Prevention (CDC), Atlanta, Georgia;3. Division of HIV/AIDS Prevention (DHAP), National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP), Centers for Disease Control and Prevention (CDC), Atlanta, Georgia;4. National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP), Centers for Disease Control and Prevention (CDC), Atlanta, Georgia;1. Department of Geography and Planning, Appalachian State University, Boone, North Carolina;2. North Carolina Institute for Climate Studies, North Carolina State University, Raleigh, North Carolina;3. Data Team, Crisis Text Line, New York City, New York;1. Department of Social Work, University of New Hampshire, Durham, New Hampshire;2. Crimes against Children Research Center, University of New Hampshire, Durham, New Hampshire;3. School of Social Work, University of North Carolina, Chapel Hill, Chapel Hill, North Carolina;4. School of Social Work, East Carolina University, Greenville, North Carolina |
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| Abstract: | PurposeThe aim of this study is to assess the level of agreement between adolescents’ self-assessment and parent-proxy reports on health-related quality of life (HRQOL) in Jamaican adolescents with chronic illness.MethodsA cross-sectional study was conducted, recruiting adolescents living with a chronic illness (ALCIs)—asthma, human immunodeficiency virus, insulin-dependent diabetes mellitus, or sickle cell disease and age/sex-matched healthy adolescents. Data were collected on HRQOL from adolescents and parents using the Pediatric Quality of Life Scale. Parent-adolescent agreement was determined at group level (Wilcoxon signed-rank test) and individual level (intraclass correlation coefficient).ResultsTwo hundred twenty-six (226) parent/adolescent pairs participated: 130 ALCIs and 96 healthy peers; mean age 14.9 ± 2.8 years; 58% females. Adolescents with and without chronic illness reported similar HRQOL; parent-proxies reported better HRQOL for healthy adolescents compared to ALCIs. Intraclass correlation demonstrated higher levels of parent-adolescent correlation for ALCIs than healthy adolescents (ALCIs: 0.11–0.34; healthy adolescents: 0.01–0.10). At group level, analyses demonstrated better parent-proxy rating of QOL in all of the scores with the exception of the general health score. Parent-proxies overestimated QOL for asthma and insulin-dependent diabetes mellitus but not for sickle cell disease and human immunodeficiency virus. Linear regression modeling revealed that female sex and living with chronic illness were significant predictors of agreement.DiscussionParent-proxies overestimated adolescents’ QOL compared to adolescents’ report regardless of whether the adolescent was living with a chronic illness or not. As such, health care providers should elicit feedback from the adolescent wherever possible and proxy reports should be used as complementary information rather than primary source. |
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| Keywords: | Adolescents Chronic illness Health-related quality of life Jamaica Level of agreement Parents Proxy report |
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