DO CHILDREN AGREE WITH CAREGIVERS ON PERCEIVED HEALTH? EXPLORING DISCREPANCIES BETWEEN SELF-REPORTED AND PROXY-REPORTED HEALTH STATUS IN CHILDREN WITH ATTENTION-DEFICIT HYPERACTIVITY DISORDER
Author(s)
Eliza Lai-Yi Wong, PhD1, Annie Wai-ling Cheung, MPhil1, Amy Yuen-Kwan Wong, MSc1, Elly Stolk, PhD2, Eng-kiong Yeoh, MBBS1.
1JC School of Public Health and Primary Care, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China, 2Erasmus University Rotterdam, Rotterdam, Netherlands.
1JC School of Public Health and Primary Care, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China, 2Erasmus University Rotterdam, Rotterdam, Netherlands.
OBJECTIVES: Although proxy reports of health status demonstrate acceptable agreement with child self-reports, discrepancies may still exist, particularly among groups with specific health needs such as children with attention-deficit hyperactivity disorder (ADHD). This study aimed to compare EQ-5D-Y-3L self- and proxy-reported outcomes among children with ADHD in a Chinese population, and to examine the potential implications for health state valuation.
METHODS: Children aged 8-17 with ADHD and their primary caregivers were recruited. A cross-sectional survey was conducted. All participants completed the EQ-5D-Y-3L to assess the child’s health. The Strengths and Weaknesses of ADHD Symptoms and Normal Behaviour Scale (SWAN) was administered to evaluate ADHD-related characteristics of children. This study focused on assessing child self- and proxy-reported agreement. Associations between self-proxy agreement and SWAN scores were also explored. Chi-square tests and paired t-tests were applied as appropriate, with statistical significance set at p < 0.05.
RESULTS: A total of 200 dyads were recruited. Around 42% of the children were indicative of inattentive ADHD symptoms while 31% have hyperactive ADHD symptoms. A higher proportion of children (67.0%) reported full health compared to their proxies (50.0%). Discrepancies between self- and proxy-reports were greatest in the dimensions of pain/discomfort (24.5%) and emotional well-being (feeling worried, sad or unhappy) (38.0%). However, differences were relatively minor in mobility (10.5%), self-care (9.0%), and usual activities (17.5%). Despite these dimensional differences, children reported significantly higher VAS scores (Mean = 82.7, SD = 14.6) compared with proxy-reports(Mean = 76.2, SD = 19.8). Greater discrepancies in the self-care domain were observed when children had inattentive ADHD symptoms at the time of assessment.
CONCLUSIONS: These findings underscore the importance of incorporating both self- and proxy-reports when assessing HRQoL in this population. Establishing the validity of the EQ-5D-Y proxy version may strengthen its utility in monitoring healthcare outcomes and its application in children's health technology assessment.
METHODS: Children aged 8-17 with ADHD and their primary caregivers were recruited. A cross-sectional survey was conducted. All participants completed the EQ-5D-Y-3L to assess the child’s health. The Strengths and Weaknesses of ADHD Symptoms and Normal Behaviour Scale (SWAN) was administered to evaluate ADHD-related characteristics of children. This study focused on assessing child self- and proxy-reported agreement. Associations between self-proxy agreement and SWAN scores were also explored. Chi-square tests and paired t-tests were applied as appropriate, with statistical significance set at p < 0.05.
RESULTS: A total of 200 dyads were recruited. Around 42% of the children were indicative of inattentive ADHD symptoms while 31% have hyperactive ADHD symptoms. A higher proportion of children (67.0%) reported full health compared to their proxies (50.0%). Discrepancies between self- and proxy-reports were greatest in the dimensions of pain/discomfort (24.5%) and emotional well-being (feeling worried, sad or unhappy) (38.0%). However, differences were relatively minor in mobility (10.5%), self-care (9.0%), and usual activities (17.5%). Despite these dimensional differences, children reported significantly higher VAS scores (Mean = 82.7, SD = 14.6) compared with proxy-reports(Mean = 76.2, SD = 19.8). Greater discrepancies in the self-care domain were observed when children had inattentive ADHD symptoms at the time of assessment.
CONCLUSIONS: These findings underscore the importance of incorporating both self- and proxy-reports when assessing HRQoL in this population. Establishing the validity of the EQ-5D-Y proxy version may strengthen its utility in monitoring healthcare outcomes and its application in children's health technology assessment.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
HSD90
Topic
Epidemiology & Public Health, Health Service Delivery & Process of Care, Patient-Centered Research
Disease
Neurological Disorders, Pediatrics