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

Indira Singh; Monika Rani Asnani; Abigail Harrison

doi:10.1016/j.jadohealth.2022.07.013

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

J Adolesc Health. 2023 Jan;72(1):12-20. doi: 10.1016/j.jadohealth.2022.07.013. Epub 2022 Oct 4.

Authors

Indira Singh¹, Monika Rani Asnani², Abigail Harrison³

Affiliations

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.
³ Department of Child and Adolescent Health, The University of the West Indies, Mona, Kingston, Jamaica. Electronic address: abigail.harrison@uwimona.edu.jm.

PMID: 36202679
DOI: 10.1016/j.jadohealth.2022.07.013

Abstract

Purpose: 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.

Methods: 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).

Results: 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.

Discussion: 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.

Keywords: Adolescents; Chronic illness; Health-related quality of life; Jamaica; Level of agreement; Parents; Proxy report.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Anemia, Sickle Cell*
Asthma*
Child
Chronic Disease
Cross-Sectional Studies
Diabetes Mellitus, Type 1*
Female
Humans
Jamaica
Male
Proxy
Quality of Life