Minimum data set to measure rehabilitation needs and health outcome after major trauma: application of an international framework.

Background: Measurement of long term health outcome after trauma remains non-standardized and ambiguous which limits national and international comparison of burden of injuries. The World Health Organization (WHO) has recommended the application of the International Classification of Function, Disability and Health (ICF) to measure rehabilitation and health outcome worldwide. No previous poly-trauma studies have applied the ICF comprehensively to evaluate outcome after injury.

Aim: To apply the ICF categorization in patients with traumatic injuries to identify a minimum data set of important rehabilitation and health outcomes to enable national and international comparison of outcome data.

Design: A mixed methods design of patient interviews and an on-line survey.

Setting: An ethnically diverse urban major trauma center in London.

Population: Adult patients with major traumatic injuries (poly-trauma) and international health care professionals (HCPs) working in acute and post-acute major trauma settings.

Methods: Mixed methods investigated patients and health care professionals (HCPs) perspectives of important rehabilitation and health outcomes. Qualitative patient data and quantitative HCP data were linked to ICF categories. Combined data were refined to identify a minimum data set of important rehabilitation and health outcome categories.

Results: Transcribed patient interview data (N.=32) were linked to 234 (64%) second level ICF categories. Two hundred and fourteen HCPs identified 121 from a possible 140 second level ICF categories (86%) as relevant and important. Patients and HCPs strongly agreed on ICF body structures and body functions categories which include temperament, energy and drive, memory, emotions, pain and repair function of the skin. Conversely, patients prioritised domestic tasks, recreation and work compared to HCP priorities of self-care and mobility. Twenty six environmental factors were identified. Patient and HCP data were refined to recommend a 109 possible ICF categories for a minimum data set.

Conclusions: The comprehensive measurement of health outcomes after trauma is important for patients, health professionals and trauma systems. An internationally applied ICF minimum data set will standardize the language used and concepts measured after major trauma to enable national and international comparison of outcome data.

Clinical Rehabilitation Impact: A minimum ICF data set for trauma will standardize rehabilitation language and provide a minimum dataset to capture outcome in trauma systems to enable comparison and service improvement.