Experience with an online prospective database on adolescent idiopathic scoliosis: development and implementation

Abstract

Considerable variability exists in the surgical treatment and outcomes of adolescent idiopathic scoliosis (AIS). This is due to the lack of evidence-based treatment guidelines and outcome measures. Although clinical trials have been extolled as the highest form of evidence for evaluating treatment efficacy, the disadvantage of cost, time, lack of feasibility, and ethical considerations indicate a need for a new paradigm for evidence based research in this spinal deformity. High quality clinical databases offer an alternative approach for evidence-based research in medicine. So, we developed and established Scolisoft, an international, multidimensional and relational database designed to be a repository of surgical cases for AIS, and an active vehicle for standardized surgical information in a format that would permit qualitative and quantitative research and analysis. Here, we describe and discuss the utility of Scolisoft as a new paradigm for evidence-based research on AIS. Scolisoft was developed using dot.net platform and SQL server from Microsoft. All data is deidentified to protect patient privacy. Scolisoft can be accessed at (www.scolisoft.org). Collection of high quality data on surgical cases of AIS is a priority and processes continue to improve the database quality. The database currently has 67 registered users from 21 countries. To date, Scolisoft has 200 detailed surgical cases with pre, post, and follow up data. Scolisoft provides a structured process and practical information for surgeons to benchmark their treatment methods against other like treatments. Scolisoft is multifaceted and its use extends to education of health care providers in training, patients, ability to mine important data to stimulate research and quality improvement initiatives of healthcare organizations.

Fig. 1

Figure showing the three main functions of Scolisoft—Search for cases, Create a new case, and View/edit your own case (bold red arrow)

Fig. 2

Figure showing data querying form in Scolisoft

Fig. 3

Overview of data collection and entry into Scolisoft

Fig. 4

Figure showing data completion indication on Scolisoft (bold red arrows)

Fig. 5

Screen with series of radiographs showing variation of level selection for similar curves treated with anterior surgery

Fig. 6

Screen with series of clinical photographs before and after surgery of the same patients whose radiographs were shown in figure