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Adolescent Idiopathic Scoliosis Minimum Data Set: Towards Standardization of Data Elements in History and Physical
Jenny L Zheng1, Ying Li2, Grant Hogue3
1Orthopedic Surgery, Children's Hospital of Philadelphia, Philadelphia, USA.
Introduction:
Nonoperative care represents a cornerstone of adolescent idiopathic scoliosis (AIS) management, although no consensus exists for a minimal data set. We aimed to determine a consensus in critical data points to obtain during clinical AIS visits.
Methods:
A REDCap-based survey was distributed to Pediatric Orthopedic Society of America (POSNA), Pediatric Spine Study Group (PSSG), and International Society on Scoliosis Orthopedic and Rehabilitation Treatment (SOSORT). Respondents ranked the importance of data points in history, physical examination, and bracing during AIS visits. Results: One hundred eighty-one responses were received (26% response rate), of which 86% were physicians and 14% were allied health professionals. About 80% of respondents worked at pediatric hospitals or pediatric spaces within adult hospitals, and 82% were academic, with the majority (57%) seeing 150+ unique AIS patients annually. Most respondents recommended six-month follow-up for patients under observation (60%) and bracing (54%). Most respondents (75%) considered family history and pain important (69%), with the majority (69%) asking about pain at every visit. Across all time points, Adam's forward bend test, shoulder level, sagittal contour, trunk shift, and curve stiffness were all considered critically important (>60%). At the first visit, scapular prominence, leg lengths, motor and neurological examination, gait, and iliac crest height were also viewed as critical. At the preoperative visit, motor strength and scapular prominence should also be documented. About 39% of respondents use heat sensors to monitor bracing compliance, and average brace wear since the prior visit was considered the most important (85%) compliance data point.
Conclusions:
This study establishes recommendations for a 19-item minimum data set for clinical AIS evaluation, including history, physical exam, and bracing, to allow for future multicenter registry-based studies.
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