Identification and Feasibility of Minimal Data Elements for Physical Function Outcomes of Patients with Traumatic Brain Injury at Mbarara Regional Referral Hospital and Mulago National Referral Hospital

Abstract

Rehabilitation is an important part of care for patients with traumatic brian injury, and rehabilitation system strengthening is a priority in the Ugandan healthcare system. Currently, there is no countrywide disease-specific data available to inform research, system development, and provision of rehabilitation care. This study identifies data elements related to physical function which could be collected from patients with traumatic brain injury in Uganda. The study examines both what data would be important to collect, and which elements would be feasible to collect.A modified Delphi study is used to gain expert consensus on data elements which would be important to a national-level surveillance system. Then, a mixed-methods study examines implementation domains for data collection. Review of medical files at Mbarara Regional Referral Hospital (MRRH) and Mulago National Referral Hospital (MNRH) quantified data availability dimensions. Focus groups and semi-structured interviews gained provider input on barriers and facilitators to data collection in their work. Thirty-four elements reached expert consensus as important. The majority of studied elements were not readily available in medical records. However, providers felt that many of the elements were assessed as part of the standard of care, and would be easy to document with training and development of a streamlined, standardized collection tool. The identification and feasibility analysis of these data elements represents the first steps towards development of a registry including functional outcomes for patients with TBI in Uganda.