A cause for concern? How discrepancies between self- and parent proxy-reported quality of life are associated to well-being in children and adolescents attending a headache outpatient clinic: A case-control study.

OBJECTIVES: We examined whether discrepancies between self-reported and parent proxy-reported health-related quality of life (HRQoL) were associated with child well-being in children and adolescents attending a headache clinic compared to controls. Well-being was defined as Emotional Impact of headaches, Headache-related Quality of Life (QoL), and psychosocial difficulties. BACKGROUND: HRQoL is significantly reduced in children with headaches. The Pediatric Quality of Life Inventory (PedsQL) is the most widely used instrument to assess HRQoL in children with headache using self- and parent proxy reports. Parent-child discrepancies-differences between child and parent scores-are considered normal, but clinical experience suggests they can indicate underlying well-being issues contributing to persistent headaches. Assuming discrepancies are always normal risks overlooking their potential as a cause for concern, indicating underlying problems. METHODS: This cross-sectional case-control study, conducted between October 2018 to January 2024, recruited patients from the Headache Clinic, Department of Pediatrics and Adolescent Medicine, Copenhagen University Hospital, Denmark, and controls from schools. Participant age range was 5 to 19 years. Self- and parent proxy-reported HRQoL were assessed with PedsQL in versions for children ages 5 to 7, 8 to 12, and 13 to 18 years. PedsQL total score was used to assess overall HRQoL. Emotional Impact and Headache-related QoL were assessed with the Child and Adolescent Headache-Attributed Restriction, Disability, Social Handicap, and Impaired Participation Questionnaire; psychosocial difficulties with the Total Difficulties Scale from the Strengths and Difficulties Questionnaire. RESULTS: We included 359 patients and 128 controls. Interrater agreement on PedsQL was moderate to good (intraclass correlation coefficients 0.57 to 0.79). However, significant parent-child discrepancies in mean PedsQL scores were observed. Parents rated their child's HRQoL higher than the children themselves, with parent-child mean differences of 1.86 (95% confidence interval [CI] 0.84 to 2.87, p < 0.001) for patients and 3.36 (95% CI 2.15 to 4.57, p < 0.001) for controls. Discrepancies were associated with headache-related well-being: For each point, parents rated higher than their children, Emotional Impact increased by 0.05 points (95% CI 0.02 to 0.08, p = 0.005) and Headache-related QoL decreased by 0.18 points (95% CI -0.24 to -0.12, p < 0.001). We found no association with psychosocial difficulties. Thirty-five percent of participants had clinically meaningful discrepancies, defined as parents rating their child's HRQoL ≥4.5 points higher than the child's self-report. They had more severe headaches than those without meaningful discrepancies, indicated by greater Emotional Impact (5.6 ± 2.5 vs. 4.7 ± 3.2, p = 0.018), lower Headache-related QoL (23.7 ± 5.2 vs. 26.5 ± 4.9, p < 0.001), and increased headache frequency (p = 0.005). CONCLUSION: One-third of participants had parents reporting their child's HRQoL higher than the child themselves. Parent-child discrepancies for which parents rated higher were associated with poorer headache-related well-being. This supports our clinical experience that parent-child discrepancies in HRQoL may be cause for concern, warranting further discussion with the family to explore and contextualize the child's well-being.