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.

While equal merit should ideally be given to pediatric chronic pain patients' self-reports and their parents' proxy reports of pain intensity and disability, it would appear that, as needed, pediatric patients or parents can offer a clinically valid, single clinical perspective.

Background. Pediatric chronic pain is considered to be a multidimensional construct that includes biological, psychological, and social components. Methods. The 99 enrolled study patients (mean age 13.2 years, 71% female, 81% Caucasian) and an accompanying parent completed a series of health-related questionnaires at the time of their initial appointment in a pediatric chronic pain medicine clinic. Results. Significant correlations (r ≥ 0.30, P < 0.05) were observed between pediatric chronic pain intensity and patient anxiety, patient depression, patient pain coping, parent chronic pain intensity, and parent functional disability. Pediatric chronic pain intensity was significantly associated with patient anxiety (P = 0.002). Significant correlations (r ≥ 0.30, P < 0.05) were observed between pediatric functional disability and patient chronic pain intensity, patient anxiety, patient depression, patient pain coping, parent chronic pain intensity, parent functional disability, parent anxiety, parent depression, and parent stress. Pediatric functional disability was significantly associated with patient chronic pain intensity (P = 0.025), patient anxiety (P = 0.021), patient pain coping (P = 0.009), and parent functional disability (P = 0.027). Conclusions. These findings provide empirical support of a multidimensional Biobehavioral Model of Pediatric Pain. However, the practical clinical application of the present findings and much of the similar previously published data may be tenuous.