Research Questionnaire (RQ) – Research on the Impact of People Living with Brain Injury
Given the complex and changing service systems supporting individuals with ABI, the Ontario Brain Injury Association (OBIA) through funding and support from the Ontario Neurotrauma Foundation (ONF) is revising the OBIA research questionnaire. OBIA and ONF recognize the need for data to inform advocacy, education and service development for individuals living with traumatic brain injury (TBI) and their families. The questionnaire has been used to acquire data reflecting the impact of ABI from persons with lived experience for over 25-years will be revised to ensure easy accessibility for providers, families and PLEx groups.
The revised RQ will launch in late 2019 and will record factors such as a person’s access to services and gaps and/or barriers within the system. The goal is to provide relevant research data to better inform healthcare policy makers, healthcare region planners, insurers and researchers who are examining ways in which people living with a brain injury can be better served.
Randomized Controlled Feasibility Trial on the Ontario Brain Injury Association Peer Support Program
Principal Investigator: Dr. Sarah Munce
This is a three-phase project with the overall objective to evaluate the feasibility and acceptability of conducting a randomized controlled trial (RCT) of the Ontario Brain Injury Association (OBIA) Peer Support Program for individuals with moderate-to-severe traumatic brain injury.
Phase 1: qualitative interviews will be conducted with key informants to gain insight on how to refine the processes for a RCT. Results will be used to modify the pilot protocol and offer considerations for future planning related to recruitment, adherence, and retention of brain injury participants in both the peer support program and research.
Phase 2: a 4-month pilot RCT will be conducted to evaluate the impact of the OBIA Peer Support Program. Outcome data will also demonstrate the immediate impact of the once/week OBIA Peer Support Program compared to a wait list control group on social participation (primary outcome), mood, health related quality of life, and self-efficacy (secondary outcomes).
Phase 3: qualitative interviews will be conducted with those who participated in the Phase 2 RCT. This phase will explore the impacts of participating in peer support on individuals, as well as gain insights into their overall experience of participating in research. The results of Phase 3 will lead to an understanding of the “active ingredients” or mechanisms that are associated with improved outcomes and the impact of “dosage” of interactions.
The results of all three phases will help support the refinement and improvement of future iterations of the OBIA Peer Support Program and the implementation of a future, large-scale RCT.
Development of a remotely delivered learning and memory intervention and province-wide delivery infrastructure
Principal Investigator: Dr. Robin Green
More than 1% of the Canadian population suffers persisting disability from traumatic brain injury (TBI). Memory impairment is one the most common and debilitating causes, implicated in failed return to work and school, and in compromised personal relationships. The primary research aim is to test the effectiveness of a novel, online visuospatial learning and memory intervention for patients with moderate-severe TBI, one that can be delivered to patients in their own homes and requires minimal supervision. The computer-based protocol is designed to enhance learning and memory capacity and to improve the structure and function of the “hippocampi” (the brain’s memory structures), which has shown to be vulnerable to atrophy in the later stages of injury. Most rehabilitation is delivered in the early weeks and months of injury. This intervention was developed for patients in the chronic stages of injury, to help to fill an enormous clinical care gap at a stage when patients are particularly vulnerable.
The 16-week intervention involves navigating through different cities weekly, using Google Streetview. The protocol harnesses two lines of research associated with hippocampal benefits: “allocentric spatial navigation” (navigating from a bird’s eye view), and environmental enrichment – continuously novel, complex, engaging, intensive and challenging cognitive stimulation. To assess the treatment impact, researchers will undertake memory and neuroimaging assessments before and after treatment, comparing TBI patients in the treatment group to those in the control group.
The secondary aim of the research, in collaboration with the March of Dimes, is to begin to develop infrastructure in northern Ontario to facilitate the ongoing delivery of self-administered interventions. This arm of the study will examine the feasibility and efficacy of the intervention for patients living in areas remote from treatment centres. An estimated 140,000 Ontarians currently live with the enduring effects of TBI. Developing remotely deliverable, self-administered treatments is critical to the scaling of treatment to address these numbers, and to reach those for whom geographical barriers can preclude access to treatment.
The Prevalence and Impact of Traumatic Brain Injury Among People Seeking Treatment for Substance Use Disorders (SUBI)
Principal Investigator: Carolyn Lemsky
Community Head Injury Resource Services of Toronto (CHIRS), CAMH and ONF have partnered to examine the relationship between TBI history in people seeking treatment for substance use disorders.
A growing body of evidence suggests that most TBIs in adults are in some way alcohol-related, resulting in high rates of Substance Use Disorders (SUD) for those seeking rehabilitation services.
Over 4000 adults at the time of intake to treatment (at a large, urban multi-service mental health and addictions research and teaching medical centre) during a 54-month period were included. The study was measured using a variety of tools such as the Ohio State University Brain Injury Identification Method (OSU TBI-ID), the clinical version of the Addiction Symptom Inventory-Lite (ASI-Lite), the Behavioural Symptom and Identification Scale-32 (BASIS-32) and the General Assessment of Functioning (GAF).
One in five (20.9%) of the full sample reported a TBI with loss of consciousness (LOC). History of TBI was associated with lifetime history of alcohol, amphetamine and cocaine, as well as serious problems with mood, hallucinations, suicidal thoughts, managing violent behaviour and difficulty concentrating or remembering.
Screening for TBI in general addictions programs will identify individuals most at risk for having a complex treatment course. In-depth screening is highly recommended for programs serving individuals with concurrent mental health and additions, and in populations with high rates of TBI (such as those in the military or experiencing homelessness).