Health-Related Quality of Life in Adolescents With Chronic Illness in Jamaica: Adolescent and Parent Reports



      The 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.


      A 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).


      Two 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.


      Parent-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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        • Moriarty D.G.
        • Zack M.M.
        • Kobau R.
        The Centers for Disease Control and Prevention's Healthy Days Measures - population tracking of perceived physical and mental health over time.
        Health Qual Life Outcomes. 2003; 1: 37
        • Santana M.J.
        • Feeny D.
        The importance of measuring health- related quality of life. Institute of health Economics.
        (Available at:)
        • Guyatt G.H.
        • Feeny D.H.
        • Patrick D.L.
        Measuring health-related quality of life.
        Ann Intern Med. 1993; 118: 622-629
        • Suris J.C.
        • Michaud P.A.
        • Viner R.
        The adolescent with a chronic condition. Part I: Developmental issues.
        Arch Dis Child. 2004; 89: 938-942
        • Klein-Gitelman M.S.
        • Curran M.L.
        The challenges of adolescence, Mood Disorders, and chronic illness.
        J Pediatr. 2015; 167: 1192-1194
        • World Health Organization
        Division of mental health and Prevention of Substance Abuse. WHOQOL: measuring Qual Life.
        (Available at:)
        Date: 1993
        Date accessed: June 26, 2021
        • Hays R.M.
        • Valentine J.
        • Haynes G.
        • et al.
        The Seattle pediatric Palliative care Project: Effects on family satisfaction and health-related quality of life.
        J Palliat Med. 2006; 9: 716-728
        • Jozefiak T.
        • Larsson B.
        • Wichstrøm L.
        • et al.
        Quality of life as reported by school children and their parents: A cross-sectional survey.
        Health Qual Life Outcomes. 2008; 6: 34
        • Campo J.V.
        • Comer D.M.
        • Jansen-Mcwilliams L.
        • et al.
        Recurrent pain, emotional distress, and health service use in childhood.
        J Pediatr. 2002; 141: 76-83
        • Janicke D.M.
        • Finney J.W.
        • Riley A.W.
        Children's health care use: A prospective investigation of factors related to care-seeking.
        Med Care. 2001; 39: 990-1001
        • Gordon L.N.
        Child participation in Jamaica: Cultural Reality versus Idealism.
        Social Econ Stud. 2015; 64: 49-74
        • Brown Janet
        Parental Resistance to child Rights: The case of Jamaica.
        Development. 2001; 44: 28-34
        • Eiser C.
        • Morse R.
        Can parents rate their child's health-related quality of life? Results of a systematic review.
        Qual Life Res. 2001; 10: 347-357
        • Parsons S.K.
        • Barlow S.E.
        • Levy S.L.
        • et al.
        Health-related quality of life in pediatric bone marrow transplant survivors: According to whom?.
        Int J Cancer Suppl. 1999; 12: 46-51
        • Annett R.D.
        • Bender B.G.
        • DuHamel T.R.
        • Lapidus J.
        Factors influencing parent reports on quality of life for children with asthma.
        J Asthma. 2003; 40: 577-587
        • Witt S.
        • Dellenmark-Blom M.
        • Kuckuck S.
        • et al.
        Parent–child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia: A Swedish–German cross-sectional study.
        Orphanet J Rare Dis. 2021; 16: 120
        • Robitail S.
        • Simeoni M.C.
        • Erhart M.
        • et al.
        Validation of the European proxy KIDSCREEN-52 pilot test health-related quality of life questionnaire: First results.
        J Adolesc Health. 2006; 39
        • Petsios K.
        • Priftis K.N.
        • Tsoumakas C.
        • et al.
        Level of parent-asthmatic child agreement on health-related quality of life.
        J Asthma. 2011; 48: 286-297
        • White-Koning M.
        • Arnaud C.
        • Dickinson H.O.
        • et al.
        Determinants of child-parent agreement in quality-of-life reports: A European study of children with cerebral palsy.
        Pediatrics. 2007; 120: e804-e814
        • Mueller R.
        • Ziade F.
        • Pittet V.
        • et al.
        Quality of life in Swiss paediatric Inflammatory Bowel disease patients: Do patients and their parents experience disease in the same way?.
        J Crohns Colitis. 2016; 10: 269-276
        • Sneeuw K.C.
        • Aaronson N.K.
        • Sprangers M.A.
        • et al.
        Evaluating the quality of life of cancer patients: Assessments by patients, significant others, physicians and nurses.
        Br J Cancer. 1999; 81: 87-94
        • Blake A.
        • Guthrie-Dixon N.
        • Grindley M.
        • et al.
        Level of agreement between adolescents' self-assessment and parent proxy report of health-related quality of life in adolescents with sickle cell disease.
        Pediatr Blood Cancer. 2020; 67: e28198
        • Tulloch-Reid M.K.
        • Walker S.P.
        Quality of life in Caribbean youth with diabetes.
        West Indian Med J. 2009; 58: 250-256
        • Asnani M.R.
        • Barton-Gooden A.
        • Grindley M.
        • Knight-Madden J.
        Disease Knowledge, illness perceptions, and quality of life in adolescents with sickle cell disease: Is there a Link?.
        Glob Pediatr Health. 2017; 4 (2333794X17739194)
        • Wilks R.
        • Younger N.
        • McFarlane S.
        • et al.
        Jamaican youth risk and resiliency behaviour survey 2006: Community-based Survey on Risk and resiliency Behaviours of 15–19 Year olds.
        • Varni J.W.
        • Seid M.
        • Kurtin P.S.
        PedsQL 4.0: Reliability and validity of the pediatric quality of life Inventory version 4.0 generic core scales in healthy and patient populations.
        Med Care. 2001; 39: 800-812
        • Varni J.W.
        • Limbers C.A.
        • Burwinkle T.M.
        Parent proxy-report of their children's health-related quality of life: An analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQL 4.0 generic core scales.
        Health Qual Life Outcomes. 2007; 5
        • Ewing G.
        • Rogers M.
        • Barclay S.
        • et al.
        Palliative care in primary care: A study to determine whether patients and professionals agree on symptoms.
        Br J Gen Pract. 2006; 56: 27-34
        • Becker G.
        • Merk C.S.
        • Meffert C.
        • Momm F.
        Measuring individual quality of life in patients receiving radiation therapy: The SEIQoL-questionnaire.
        Qual Life Res. 2014; 23: 2025-2030
        • Su C.T.
        • Wang J.D.
        • Lin C.Y.
        Child-rated versus parent-rated quality of life of community-based obese children across gender and grade.
        Health Qual Life Outcomes. 2013; 11: 206
        • Theunissen N.C.
        • Vogels T.G.
        • Koopman H.M.
        • et al.
        The proxy problem: Child report versus parent report in health-related quality of life research.
        Qual Life Res. 1998; 7: 387-397
        • Panepinto J.A.
        • O'Mahar K.M.
        • DeBaun M.R.
        • et al.
        Health-related quality of life in children with sickle cell disease: Child and parent perception.
        Br J Haematol. 2005; 130: 437-444
        • Compas B.E.
        • Jaser S.S.
        • Dunn M.J.
        • Rodriguez E.M.
        Coping with chronic illness in childhood and adolescence.
        Annu Rev Clin Psychol. 2012; 8: 455-480
        • Kalyva E.
        • Malakonaki E.
        • Eiser C.
        • Mamoulakis D.
        Health-related quality of life (HRQoL) of children with type 1 diabetes mellitus (T1DM): Self and parental perceptions.
        Pediatr Diabetes. 2011; 12: 34-40
        • Carroll W.D.
        • Wildhaber J.
        • Brand P.L.
        Parent misperception of control in childhood/adolescent asthma: The Room to Breathe survey.
        Eur Respir J. 2012; 39: 90-96
        • Xu T.
        • Wu Z.
        • Yan Z.
        • et al.
        Measuring health-related quality of life in children living in HIV/AIDS-affected families in rural areas in Yunnan, China: Preliminary reliability and validity of the Chinese version of PedsQL 4.0 generic core scales.
        J Acquir Immune Defic Syndr. 2010; 53: S111-S115
        • Grimaldi Capitello T.
        • Fiorilli C.
        • Placidi S.
        • et al.
        What factors influence parents' perception of the quality of life of children and adolescents with neurocardiogenic syncope?.
        Health Qual Life Outcomes. 2016; 14: 79
        • Ellert U.
        • Ravens-Sieberer U.
        • Erhart M.
        • Kurth B.M.
        Determinants of agreement between self-reported and parent-assessed quality of life for children in Germany-results of the German health Interview and Examination survey for children and adolescents (KiGGS).
        Health Qual Life Outcomes. 2011; 9: 102
        • Bratt R.G.
        Housing and family well being.
        Housing Stud. 2002; 17: 1
        • Ruiz-Tagle J.
        • Urria I.
        Household overcrowding trajectories and mental well-being.
        Soc Sci Med. 2022; 296: 114051
        • Chevannes B.
        Learning to Be a man: Culture, Socialization, and gender identity in five Caribbean Communities.
        University of the West Indies Press, Barbados2001