%0 Journal Article
%T 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?
%A Vetter Thomas R
%A Bridgewater Cynthia L
%A McGwin Gerald
%J Health and Quality of Life Outcomes
%D 2012
%I BioMed Central
%R 10.1186/1477-7525-10-85
%X Background 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 patientsĄ¯ self-report and their parentsĄ¯ proxy-report of their childĄ¯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. Methods 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. PatientsĄ¯ and parentsĄ¯ total, physical, and psychosocial HRQoL scores were analyzed via an intra-class correlation coefficient, SpearmanĄ¯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 . Results With the exception of the psychosocial health domain, there were no statistically significant differences between pediatric patientsĄ¯ self-report and their parentsĄ¯ proxy-report of their childĄ¯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 patientĄ¯s pain, household income, parental marital status, and the parentĄ¯s own HRQoL on the SF-36v2. No significant relationship existed among patientsĄ¯ self-reported HRQoL (PedsQL ), parental proxy-reports of the childĄ¯s HRQoL, and parentsĄ¯ own self-reported HRQoL on the SF-36v2. Conclusions We observed clinically significant variation between pediatric chronic pain patientsĄ¯ self-reports and their parentsĄ¯ proxy-reports of their childĄ¯s HRQoL. While whenever possible the pediatric chronic pain patientĄ¯s own perspective should be directly solicited, equal attention and merit should be given to the parentĄ¯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.
%K Health-related quality of life
%K Chronic pain
%K Pediatric
%K Children
%K Adolescents
%K Proxy-report
%K Child-parent agreement
%U http://www.hqlo.com/content/10/1/85