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?

Cynthia L Bridgewater,Thomas R Vetter,Gerald Mcgwin

doi:10.1186/1477-7525-10-85

Abstract

BackgroundPrevious 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.MethodsThe 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™.ResultsWith 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.ConclusionsWe 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.

Highlights

Previous pediatric studies have observed a cross-informant variance in patient self-reported healthrelated quality of life (HRQoL) versus parent proxy-reported Health-related quality of life (HRQoL)
Setting and participants Study participation was offered to 145 eligible patients, ranging between 8 years and 17 years of age, who were initially evaluated in an outpatient pediatric chronic pain medicine clinic, located at a free-standing children’s hospital, between May 2009 and December 2010
Our findings indicate that in children and adolescents with a variety of chronic pain conditions referred to a subspecialty clinic: 1) there is clinically significant variation and some minimal clinically important differences between

Summary

Introduction

Previous pediatric studies have observed a cross-informant variance in patient self-reported healthrelated quality of life (HRQoL) versus parent proxy-reported HRQoL. Previous pediatric studies have observed an imperfect concordance or a cross-informant variance in patient self-reported HRQoL versus parent proxy-reported HRQoL [8,13,14] This discordance has been observed in healthy subjects [15,16] and in a community adolescent sample [17], and in patients with a psychiatric disorder [18], migraine headache [19,20], inflammatory bowel disease [21], functional abdominal pain [22], juvenile arthritis [11], cancer [23,24], and sickle cell disease [25]. The factors that are associated with this patient-parent discordance have not been identified, and no recommendations have been made as to how to clinically reconcile such patient-parent discordance

Methods

Results

Discussion

Conclusion