Self-Reported Health-Related Quality-of-Life in Adolescent Patients with Complex Chronic Health Conditions from A Longitudinal Registry Study in Los Angeles County
Author(s)
Cynthia Gong, PharmD, PhD1, Joanne Wu, MS, MD2, Ning Yan Gu, PhD3;
1Curta, Seattle, WA, USA, 2University of Southern California, Los Angeles, CA, USA, 3Exact Sciences & University of San Francisco, San Francisco, CA, USA
1Curta, Seattle, WA, USA, 2University of Southern California, Los Angeles, CA, USA, 3Exact Sciences & University of San Francisco, San Francisco, CA, USA
Presentation Documents
OBJECTIVES: To assess self-reported health-related quality-of-life (HRQoL) using the EQ-5D-5L in adolescent patients with special healthcare needs and at increased risk for chronic physical, developmental, behavioral, or emotional health issues.
METHODS: Since 2020, adolescents aged 16-26 with special healthcare needs have been recruited from rheumatology, hematology, endocrinology, and cardiology clinics at the Children’s Hospital Los Angeles (CHLA), from a longitudinal registry study. Participants completed the EQ-5D-5L and sociodemographic information via annual surveys. EQ index scores were calculated using the existing US algorithm. We compared the EQ-5D-5L index score and EQ VAS across specialty clinic types as a proxy for primary disease conditions using one-way ANOVA. Regression models were used to associations between parameters and HRQoL scores.
RESULTS: Ninety respondents completed the EQ-5D-5L. Amongst, 7 (7.8%) were recruited from cardiology, 9 (10.0%) from endocrinology, 15 (16.7%) from hematology, and 59 (65.5%) from rheumatology. Mean (SD) age was 20.6 (1.7) years, ranging from 17.1 to 24.4 years, with 71.8% (n=61) being females. Mean (SD) EQ index was 0.79 (0.23) and EQ VAS was 74.0 (20.6), 0.13 and 10.9 points lower than that of the US population aged <25 years. Mean (SD) EQ index score ranged from 0.76 (0.19) for cardiology to 0.83 (0.19) for endocrinology. Mean (SD) EQ VAS ranged from 71.5 (18.9) for hematology to 82.3 (19.2) for cardiology. The median EQ index score decreased from 0.90 (age 17-18 years) to 0.88 (age 19-20 years) to 0.83 (age 21-25 years). Similar trends were detected for EQ VAS scores, except for 23-25-year-olds, where a slight improvement was observed.
CONCLUSIONS: EQ-5D-5L scores were lower than those for the US population aged <25 years. Scores varied by primary disease condition and decreased as age increased. Although there was insufficient power to detect statistical differences, noted differences may be considered clinically meaningful.
METHODS: Since 2020, adolescents aged 16-26 with special healthcare needs have been recruited from rheumatology, hematology, endocrinology, and cardiology clinics at the Children’s Hospital Los Angeles (CHLA), from a longitudinal registry study. Participants completed the EQ-5D-5L and sociodemographic information via annual surveys. EQ index scores were calculated using the existing US algorithm. We compared the EQ-5D-5L index score and EQ VAS across specialty clinic types as a proxy for primary disease conditions using one-way ANOVA. Regression models were used to associations between parameters and HRQoL scores.
RESULTS: Ninety respondents completed the EQ-5D-5L. Amongst, 7 (7.8%) were recruited from cardiology, 9 (10.0%) from endocrinology, 15 (16.7%) from hematology, and 59 (65.5%) from rheumatology. Mean (SD) age was 20.6 (1.7) years, ranging from 17.1 to 24.4 years, with 71.8% (n=61) being females. Mean (SD) EQ index was 0.79 (0.23) and EQ VAS was 74.0 (20.6), 0.13 and 10.9 points lower than that of the US population aged <25 years. Mean (SD) EQ index score ranged from 0.76 (0.19) for cardiology to 0.83 (0.19) for endocrinology. Mean (SD) EQ VAS ranged from 71.5 (18.9) for hematology to 82.3 (19.2) for cardiology. The median EQ index score decreased from 0.90 (age 17-18 years) to 0.88 (age 19-20 years) to 0.83 (age 21-25 years). Similar trends were detected for EQ VAS scores, except for 23-25-year-olds, where a slight improvement was observed.
CONCLUSIONS: EQ-5D-5L scores were lower than those for the US population aged <25 years. Scores varied by primary disease condition and decreased as age increased. Although there was insufficient power to detect statistical differences, noted differences may be considered clinically meaningful.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
PCR215
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Cardiovascular Disorders (including MI, Stroke, Circulatory), SDC: Diabetes/Endocrine/Metabolic Disorders (including obesity), SDC: Musculoskeletal Disorders (Arthritis, Bone Disorders, Osteoporosis, Other Musculoskeletal), SDC: Pediatrics