Do Caregivers and Patients With Early-Onset Scoliosis Share the Same Perspective on Health-Related Quality of Life? A Comparison of 24-item Early-Onset Scoliosis Questionnaire and 22-item Scoliosis Research Society Questionnaire Scores.

OBJECTIVE

The 24-item Early-Onset Scoliosis Questionnaire (EOSQ-24) is validated in patients with early onset scoliosis (EOS) aged 0 to 18 years and the 22-item Scoliosis Research Society (SRS-22) questionnaire is validated in idiopathic scoliosis patients 10 years and older. EOSQ-24 is completed by the caregiver and SRS-22 is completed by the patient. A prior study comparing patient-reported outcome measures completed by older pediatric patients and their parents showed a low level of agreement. Our purpose was to compare EOSQ-24 and SRS-22 scores completed at the same time point and at subsequent time points, in patients aged 5 to 18 years with idiopathic or congenital EOS without developmental delay.

METHODS

This was a multicenter retrospective study. We identified pairs of EOSQ-24 and SRS-22 completed on the same day or within 6 months. Some patients had multiple pairs of surveys over time. EOSQ-24 and SRS-22 questions were matched and domain scores for Pain, Function, Mental Health, and Satisfaction were compared. Patients with a change in treatment between surveys were excluded. Pearson correlation coefficients ( r ) were used to compare domain scores, with r ≥0.7 indicating a strong relationship.

RESULTS

There were 228 patient-caregiver dyads who completed 411 pairs of EOSQ-24 and SRS-22 on the same day. A strong correlation was found only for the Pain domain ( r =0.77). Function, Mental Health, and Satisfaction domains had positive but not strong correlations ( r = 0.58, r = 0.50, r = 0.41, respectively). Subanalysis based on age also showed a strong correlation only for Pain. There were 76 patient-caregiver dyads who completed 134 pairs of surveys with SRS-22 completed within 6 months after an EOSQ-24. All domains demonstrated a positive but not strong correlation, with Pain showing the highest correlation ( r = 0.64).

CONCLUSIONS

EOSQ-24 and SRS-22 had a strong correlation only for Pain when completed at the same time point. EOSQ-24 and SRS-22 completed within 6 months lacked a strong correlation for all domains. Our findings suggest that parents and children with EOS may not share the same perspective on their health. Self-reported questionnaires should be used when possible to assess health-related quality of life in older children and adolescents with EOS who are developmentally neurotypical.

LEVEL OF EVIDENCE

Level III-diagnostic.