O2089: Adolescent Idiopathic Scoliosis Minimum Data Set: Towards Standardization of Data Elements in History and Physical Examination for AIS Research

Background: Nonoperative care represents a cornerstone of Adolescent Idiopathic Scoliosis (AIS) management. However, no consensus exists for common mandatory elements of AIS office visits. We aimed to survey members of large organizations who treat scoliosis to determine a consensus in important data points to obtain during clinical visits.

Methods: A REDCap-based survey was developed across four institutions and beta-tested by staff and fellows from a single institution. The survey was distributed to POSNA, PSSG, and SOSORT, and shared on social media. Participants were asked to rank the importance of various datapoints in history, physical examination, and bracing during AIS visits. Data elements were defined as critical for a minimum data set if 60% of respondents perceived them as important.

Results: 181 responses were received from the US and 22 other countries (26% response rate). Of respondents, 86% were physicians and 14% were allied health professionals. 80% of respondents worked at a free-standing pediatric hospital or in a pediatric space within an adult hospital, and 82% were academic, with the majority (57%) seeing 150+ unique AIS patients per year. Most respondents recommended 6-month follow-up intervals for patients under observation (60%) and undergoing bracing (54%). Most respondents (75%) considered family history important, although with variability regarding specific factors of family history. Respondents also considered pain important (69%) with the majority (69%) asking about pain at every visit.

Across all time points (Figure 1), Adam’s Forward Bend Test, shoulder level, sagittal contour, trunk shift, and curve stiffness were all considered critically important physical exam elements (>60%). At the first visit, scapular prominence, leg lengths, motor and neurological examination, gait, and iliac crest height were also viewed as critical. During subsequent visits, deep tendon reflexes, gait, abdominal reflexes, ankle clonus, and Babinski test became less important while skin assessment became more important. At the preoperative visit, motor strength and scapular prominence should be documented. Skin assessment and deep tendon reflexes were also considered more important than in previous visits. The least important physical exam findings across all time points included popliteal angles, straight leg test, pain with motion, and tenderness to palpation.

39% of respondents use heat sensors/buttons to monitor bracing compliance, while the remaining 61% use patient-reported compliance. Average brace wear since the prior visit was the most important (85%) compliance datapoint.

Conclusion: In the face of variability in clinical evaluation of AIS, this study establishes an 18-item minimum data set for clinical AIS visits (Figure 2), agreed on by a plurality of survey respondents. This data set will allow for future large multicenter registry-based studies to improve nonoperative treatment of AIS.