Comparison of patient- and parent-reported outcome measures in pediatric limb deformity patients as assessed by the Limb Deformity-Scoliosis Research Society Questionnaire.

Abstract

The agreement - or lack thereof - between patient- and parent-reported limb deformity Scoliosis Research Society (LD-SRS) questionnaires has not been described. Proxy accuracy varies depending on the patient-reported outcome measure (PROM) used and patient population, with differences reported in zero, some, or all content subgroups. This prospective study compares patient- and parent-reported scores to understand where the LD-SRS falls on this continuum. We enrolled 24 subjects aged 11-18 years who had lower limb deformity surgery (11 internal nail lengthening, 6 osteotomy, 5 guided growth, and 4 external fixation procedures). Children and their guardians completed the appropriate patient- or parent-reported LD-SRS before surgery, which were compared using established content subgroups. A significant difference (P < 0.05) was found in the mental health content subgroup (effect size = 0.5). No significant differences were observed in the function/activity, pain, or self-image/appearance content subgroups, and global scores did not vary significantly. Although proxy LD-SRS reports are largely informative, the significant difference between patient- and parent-reported scores in the mental health content subgroup emphasizes the value of obtaining PROMs from the adolescent whenever possible.