An observational study of patient versus parental perceptions of health-related quality of life in children and adolescents with a chronic pain condition: who should the clinician believe?
Open Access
- 23 July 2012
- journal article
- Published by Springer Science and Business Media LLC in Health and Quality of Life Outcomes
- Vol. 10 (1), 85
- https://doi.org/10.1186/1477-7525-10-85
Abstract
Previous pediatric studies have observed a cross-informant variance in patient self-reported health-related quality of life (HRQoL) versus parent proxy-reported HRQoL. This study assessed in older children and adolescents with a variety of chronic pain conditions: 1) the consistency and agreement between pediatric patients’ self-report and their parents’ proxy-report of their child’s HRQoL; 2) whether this patient-parent agreement is dependent on additional demographic and clinical factors; and 3) the relationship between pediatric patient HRQoL and parental reported HRQoL. The 99 enrolled patients (mean age 13.2 years, 71% female, 81% Caucasian) and an accompanying parent completed the PedsQLTM 4.0 and 36-Item Short-Form Health Survey Version 2 (SF-36v2) at the time of their initial appointment in a pediatric chronic pain medicine clinic. Patients’ and parents’ total, physical, and psychosocial HRQoL scores were analyzed via an intra-class correlation coefficient, Spearman’s correlation coefficient, Wilcoxon signed rank test, and Bland-Altman plot. A multivariable linear regression model was used to evaluate the association between clinical and demographic variables and the difference in patient and proxy scores for the Total Scale Score on the PedsQL™. With the exception of the psychosocial health domain, there were no statistically significant differences between pediatric patients’ self-report and their parents’ proxy-report of their child’s HRQoL. However, clinically significant patient-parent variation in pediatric HRQoL was observed. Differences in patient-parent proxy PedsQL™ Total Scale Score Scores were not significantly associated with patient age, gender, race, intensity and duration of patient’s pain, household income, parental marital status, and the parent’s own HRQoL on the SF-36v2. No significant relationship existed among patients’ self-reported HRQoL (PedsQL™), parental proxy-reports of the child’s HRQoL, and parents’ own self-reported HRQoL on the SF-36v2. We observed clinically significant variation between pediatric chronic pain patients’ self-reports and their parents’ proxy-reports of their child’s HRQoL. While whenever possible the pediatric chronic pain patient’s own perspective should be directly solicited, equal attention and merit should be given to the parent’s proxy-report of HRQoL. To do otherwise will obviate the opportunity to use any discordance as the basis for a therapeutic discussion about the contributing dynamic with in parent-child dyad.Keywords
This publication has 81 references indexed in Scilit:
- The proxy problem anatomized: child-parent disagreement in health related quality of life reports of chronically ill adolescentsHealth and Quality of Life Outcomes, 2012
- PROMIS Pediatric Pain Interference Scale: An Item Response Theory Analysis of the Pediatric Pain Item BankThe Journal of Pain, 2010
- Conceptual and methodological advances in child-reported outcomes measurementExpert Review of Pharmacoeconomics & Outcomes Research, 2010
- Evidence-based Assessment of Health-related Quality of Life and Functional Impairment in Pediatric PsychologyJournal of Pediatric Psychology, 2008
- Children in chronic pain: Promoting pediatric patients' symptom accounts in tertiary careSocial Science & Medicine, 2008
- A Clinical Profile of a Cohort of Patients Referred to an Anesthesiology-Based Pediatric Chronic Pain Medicine ProgramAnesthesia & Analgesia, 2008
- Quality of Life as reported by school children and their parents: a cross-sectional surveyHealth and Quality of Life Outcomes, 2008
- The MOS 36-Item Short-Form Health Survey (SF-36)Medical Care, 1993
- The MOS 36-ltem Short-Form Health Survey (SF-36)Medical Care, 1992
- STATISTICAL METHODS FOR ASSESSING AGREEMENT BETWEEN TWO METHODS OF CLINICAL MEASUREMENTThe Lancet, 1986