Cerebral palsy information system with an approach to information architecture: a systematic review

BACKGROUND: Long-term complications and high costs of cerebral palsy (CP) as well as inconsistency in data related to this disease reveal the need for extensive planning to obtain accurate and complete data for the effective management of patients. OBJECTIVE: The present study reviews the information architecture of CP information system. METHOD: The relevant articles published from early 1988 to 31 July 2018 were extracted through searching PubMed, Scopus, Cochran, Web of Science and Embase databases conducted independently by two researchers. RESULTS: A total of 39 articles on CP information system were reviewed. Hospitals, rehabilitation centres and outpatient clinics were found to be the main organisations in charge of generating CP data. Each CP database used several data sources, with hospitals serving as the most important sources of information and the main generators of data. The main CP datasets were categorised into four groups of demographic data, diagnosis, motor function and visual impairment. The majority of data standards were related to the use of the International Classification of Functioning, Disability and Health and the Gross Motor Function Classification System. Finally, accuracy, completeness and consistency were the criteria employed in data quality control. CONCLUSION: Developing a robust CP information system requires deploying the principles of information architecture when developing the system, as these can improve data structure and content of CP system, as well as data quality and data sharing.