Improving primary care for persons with spinal cord injury: Development of a toolkit to guide care

OBJECTIVE: To identify a set of essential components for primary care for patients with spinal cord injury (SCI) for inclusion in a point-of-practice toolkit for primary care practitioners (PCP) and identification of the essential elements of SCI care that are required in primary care and those that should be the focus of specialist care. DESIGN: Modified Delphi consensus process; survey methodology. SETTING: Primary care. PARTICIPANTS: Three family physicians, six specialist physicians, and five inter-disciplinary health professionals completed surveys. OUTCOME MEASURES: Importance of care elements for inclusion in the toolkit (9-point scale: 1 = lowest level of importance, 9 = greatest level of importance) and identification of most responsible physician (family physician, specialist) for completing key categories of care. Open-ended comments were solicited. RESULTS: There was consensus between the respondent groups on the level of importance of various care elements. Mean importance scores were highest for autonomic dysreflexia, pain, and skin care and lowest for preventive care, social issues, and vital signs. Although, there was agreement across all respondents that family physicians should assume responsibility for assessing mental health, there was variability in who should be responsible for other care categories. Comments were related to the need for shared care approaches and capacity building and lack of knowledge and specialized equipment as barriers to optimal care. CONCLUSION: This study identified important components of SCI care to be included in a point-of-practice toolkit to facilitate primary care for persons with SCI.