Incidence of Parental Requests to Discontinue Growth-Friendly Surgical Lengthening for Early Onset Scoliosis.

Abstract

The STOP questionnaire was developed to document reasons for discontinuation of growth-friendly (GF) treatment in early onset scoliosis (EOS). This study investigated the incidence of parental request (PR) on the STOP questionnaire and compared clinical information and Early Onset Scoliosis 24-Item Questionnaire (EOSQ-24) scores of PR patients with those whose parents did not request discontinuation (non-parent request [NPR]). An international pediatric spine registry was queried for EOS patients with STOP questionnaires completed by their surgeon. Age at discontinuation, sex, and EOS etiology were recorded. GF device, number of surgical procedures, complications, STOP questionnaire reasons for discontinuation, and definitive treatment were recorded. EOSQ-24 scores and clinical information in the PR cohort were compared with the NPR cohort. Data for 1326 patients were analyzed. PR was listed on the STOP questionnaires of 46 (3.5%) patients, completed at a mean age of 12 years (SD, 3.2 years). There were no statistical differences in number of procedures or complications when comparing the PR cohort with the NPR cohort. PR patients more frequently had neuromuscular EOS (P=.002), more frequently were treated with magnetically controlled growing rods (33% vs 14%, P=.036), and more frequently were observed after GF discontinuation (P=.628). EOSQ-24 scores for the PR cohort were significantly lower in most domains except pain/discomfort. For 3.5% of the EOS patients, PR was listed on the STOP questionnaire. They frequently had neuromuscular EOS and frequently were treated with magnetically controlled growing rods. Additionally, these patients had statistically lower EOSQ-24 scores across most domains. [Orthopedics. 20XX;4X(X):XXX-XXX.].