O2080: Early Onset Scoliosis Questionnaire (EOSQ-24) Variation Amongst Parents/Caregivers

Background: The EOSQ-24 is a validated questionnaire to measure health-related quality of life for patients with EOS(Early Onset Scoliosis) and has been used to evaluate the impact of treatment of this condition on the patient and their family. There have been no studies examining the difference in answers provided by parents/caregivers.

Methods: Inclusion criteria were EOS patients with two parents/caregivers, each of whom was administered a copy of the questionnaire and asked to respond to questions independently. If one of the caregivers was unavailable at the time of the patient’s visit, it was requested electronically. If the caregivers completed the study more than 4 weeks apart it was excluded. Differences between caregiver responses were examined.

Results: Two caregivers of 84 patients both completed the EOSQ-24 at the same timepoint. 70 respondents identified as mom, 68 as dad, and 30 as other/undisclosed (stepparent, grandparent, etc). The mean difference between caregivers for standardized total EOSQ scores was 7.5 points (range: 0 – 38.6) on a 100-point scale. 26.2% (22/84) of caregivers had a difference of >10 points. Fathers gave slightly higher scores than mothers, and the difference was significant (mean 73.8 vs. 71.3, p=0.03).
The subdomain with the highest mean difference was Daily Living with a difference of 15.7. The subdomain with the lowest mean difference was Pain/Discomfort with a difference of 9.8.
At the time of the survey the patients were being treated as follows: 17 patients with magnetically lengthening growing rods, 10 patients with elongation derotation flexion (EDF) casting, 20 patients with bracing, 5 with HALO, 10 with fusion, 5 with other treatment, and 17 patients with monitoring/observation alone. Those treated with growing rods had similar EOSQ than those who had not had instrumentation (72.3 vs. 71.9, p=0.91).

Conclusion: While EOSQ provides important insight into the impact of this condition and its treatment on quality of life, there is often variability between parent/caregiver respondents. Nearly a third of patients had a greater difference in caregiver response than was found between treatment types. The difference between caregivers completing surveys is a factor that warrants consideration when interpreting EOSQ results.