Common Data Elements for Concussion in Tertiary Care: Phase One in Ontario.

BACKGROUND: Standardized data collection for traumatic brain injury (TBI) (including concussion) using common data elements (CDEs) has strengthened clinical care and research capacity in the United States and Europe. Currently, Ontario healthcare providers do not collect uniform data on adult patients diagnosed with concussion. OBJECTIVE: The Ontario Concussion Care Strategy (OCCS) is a collaborative network of multidisciplinary healthcare providers, brain injury advocacy groups, patient representatives, and researchers with a shared vision to improve concussion care across the province, starting with the collection of standardized data. METHODS: The International Framework of Functioning Disability and Health was selected as the conceptual framework to inform the selection of CDEs. The CDEs recommended by the OCCS were identified using key literature, including the National Institute of Neurological Disorders and Stroke-Zurich Consensus Statements for concussion in sport and the Ontario Neurotrauma Foundation Concussion/mTBI clinical guidelines. RESULTS: The OCCS has recommended and piloted CDEs for Ontario that are readily available at no cost, clinically relevant, patient friendly, easy to interpret, and recognized by the international scientific community. CONCLUSIONS: The implementation of CDEs can help to shift Ontario toward internationally recognized standard data collection, and in so doing yield a more comprehensive evidence-based approach to care while also supporting rigorous research.

Feasibility of an Interactive Coaching App to Enhance Post-concussion Outpatient Care.

Objectives: To determine the feasibility of patients to use a web-based health app for management of post-concussion (mTBI) symptoms in an out-patient setting. Participants: Seven (7) patients who were referred to an outpatient specialist clinic (physiatry) with persisting symptoms following a concussion. Participants had to be 18 years of age or older and more than 3 months post injury. Design: This was a prospective cohort study using a web-based platform for chronic disease management to guide patients in managing symptoms based on individual clinical recommendations. Each patient received weekly Symptom Management Plans created by a health coach and a physician specialist, designed to reinforce positive progress with clinical recommendations. Main Measures: Adherence to tracking daily recommendations and symptoms (data collected through the web-interface), The Rivermead Post-Concussion Questionnaire (self report) and a Satisfaction Questionnaire (self report). Results: Adherence to assigned clinical recommendations was close to 100%. Pre-post results on the patient reported outcome measure (Rivermead Post Concussion Tool) showed improvement for most patients in their experience of symptoms. The Satisfaction Questionnaire showed high rates of satisfaction with the App and the intervention in general. Conclusions: Use of a web-based health app with a health coach is feasible in this patient population from both the patient and clinician perspective based on high adherence. There is also some evidence of improvement of symptoms with this intervention over time. Further exploration of the use of this type of intervention with post-concussion patients could potentially impact long-term outcomes.

A qualitative study of factors influencing the decision to have an elective amputation.

BACKGROUND: Some patients with a functionally impaired lower limb choose to have an elective amputation, whereas others do not. Functional outcomes do not favor either type of treatment, making this a complex decision. The experiences of patients who have chosen elective amputation were analyzed to identify the key factors in this decision-making process. METHODS: Patients from a tertiary care amputee clinic who had chosen to undergo elective amputation of a functionally impaired lower limb participated in the present study. A qualitative research design involved the use of one-on-one semi-structured interviews, which were audio recorded and transcribed. Narrative analysis was used by three researchers to provide triangulation. Recurrent key themes and patterns were described. Personal factors in the decision-making process were identified. RESULTS: Factors that had the largest impact on the decision-making process were pain, function, and participation. Body image, self identity, and the opinions of others had little influence. Satisfaction with the surgical outcome was related to how closely the result matched the patient's expectations. Patients who were better informed prior to surgery had more realistic expectations about living with an amputation. CONCLUSIONS: The severity of pain and the desire for improved function are strong drivers for patients deciding to undergo elective amputation of a functionally impaired lower extremity. While patients do not want others' opinions, information regarding life with an amputation helps to set realistic expectations regarding outcome.