Episodic Disability and Rehabilitation Research Program

Lead Researcher - Kelly O'Brien

Research Overview

The Episodic Disability and Rehabilitation Research Program is led by Dr. Kelly O’Brien, located at the Rehabilitation Sciences Building at the University of Toronto.  Dr. Kelly O’Brien’s research program is focused on episodic disability and rehabilitation in the context of chronic conditions. Dr. O’Brien holds a Canada Research Chair in Episodic Disability and Rehabilitation.

The overall goal of Dr. O’Brien’s research program is to examine the episodic nature of disability experienced by people living with chronic conditions and determine the effectiveness of rehabilitation interventions in order to improve health outcomes, and advance care, policy and practice.

Using HIV and Long COVID as exemplars, Dr. O’Brien’s research involves characterizing the episodic nature of disability experienced by people aging with chronic disease (Episodic Disability Framework), developing and assessing the properties of patient-reported outcome measures (PROMs) of episodic disability (Episodic Disability Questionnaire) and examining the implementation of community-based rehabilitation interventions to improve health outcomes for people living with chronic disease (Community-Based Exercise Study).  Methodological areas of interest include: measurement, structural equation modelling, implementation science, Rasch analysis, qualitative methods, survey research, and systematic reviews.

Specific objectives of this research program are:

  1. To conceptualize the episodic disability experiences among adults living with Long COVID and profile its prevalence, impact and determinants over time.
  2. To further advance the development and property assessment of the Episodic Disability Questionnaire (EDQ) developed to describe the presence, severity and episodic nature of disability in for use among adults living with Long COVID in Canada and internationally.
  3. To evaluate the implementation and impact of online and in-person community-based exercise (CBE) interventions for their ability to reduce episodic disability and enhance physical activity and health outcomes among adults aging with HIV and other chronic conditions.

Dr. O’Brien’s Episodic Disability and Rehabilitation Research Program involves an international, multidisciplinary academic-clinical-community partnership of over 40 researchers, clinicians, people living with HIV, policy stakeholders and community organization representatives with expertise in HIV, chronic disease, disability and rehabilitation, measurement, exercise, health services research, knowledge translation, and community-based research.

Dr. O’Brien’s research is conducted in partnership with the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC), an international network of over 100 stakeholders that Dr. O’Brien co-founded to address and translate evidence on common priorities in HIV and rehabilitation research.  Long COVID research is conducted in partnership and collaboration with the Long COVID Community COVID Long Haulers Support Group Canada, Long COVID Support UK, Patient-Led Research Collaborative, Long COVID Ireland, and Long COVID Physio who are knowledge users and collaborators on the CIHR-funded Long COVID and Episodic Disability study.

Results of this program of research may lead to the future adaptation of the disability measurement and rehabilitation interventions with other chronic and episodic illness populations to bridge the fields of HIV and complex chronic disease and transfer research knowledge into practice.

The Episodic Disability and Rehabilitation Research Program provides opportunities for graduate trainees to build research capacity through mentoring and training in episodic disability and rehabilitation research in the context of episodic and chronic conditions.

This program of research is undertaken, in part, thanks to funding from the Canada Research Chairs program.

People

Dr. O’Brien’s Episodic Disability and Rehabilitation Research Program involves an international, multidisciplinary academic-clinical-community partnership of over 40 researchers, clinicians, people living with HIV, policy stakeholders and community organization representatives with expertise in HIV, chronic disease, disability and rehabilitation, measurement, exercise, health services research, knowledge translation, and community-based research.

Dr. O’Brien’s research is conducted in partnership with the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC), an international network of over 100 stakeholders that Dr. O’Brien co-founded to address and translate evidence on common priorities in HIV and rehabilitation research.

Collaborators

Collaborators at University of Toronto

  • Lisa Avery, Dalla Lana School of Public Health, University of Toronto
  • Ahmed Bayoumi, St. Michael’s Hospital, University of Toronto
  • Angela Cheung, University Health Network, University of Toronto
  • Aileen Davis, University of Toronto
  • Francisco Ibáñez-Carrasco, Dalla Lana School of Public Health, University of Toronto
  • Mona Loutfy, Women’s College Hospital, University of Toronto
  • Nancy Salbach, University of Toronto
  • Ann Stewart, St. Michael’s Hospital, University of Toronto
  • Carol Strike, Dalla Lana School of Public Health, University of Toronto

Collaborators in Canada

  • Soo Chan Carusone, McMaster University
  • Patty Solomon, McMaster University
  • Steven Hanna, McMaster University
  • Larry Baxter, Halifax, Nova Scotia*
  • Greg Robinson, Toronto, Ontario, Canada
  • Joanne Lindsay, Toronto, Ontario, Canada*
  • Colleen Price, Ottawa, Ontario, Canada*
  • Ada Tang, McMaster University

Collaborator Organizations in Canada

  • Realize (Tammy Yates, Kate Murzin, Puja Ahluwalia)
  • Central Toronto YMCA (Mehdi Zobeiry, Ivan Ilic, Zoran Pandovski)
  • Casey House (Carolann Murray)
  • AIDS Committee of Toronto
  • Dr. Peter AIDS Foundation
  • Positive Living Society of British Columbia (Glen Bradford)*
  • Nine Circles Community Health Centre
  • AIDS Community Care Montreal (ACCM)
  • Alliance for South Asian AIDS Prevention
  • Canadian Association for HIV Research
  • Canadian Association for Global Health

International Collaborations

  • Colm Bergin, St. James’s Hospital, Dublin, Ireland; Trinity College Dublin
  • Darren Brown, Chelsea and Westminster Hospital NHS Foundation Trust
  • Richard Harding, King’s College London, United Kingdom
  • Kristine Erlandson, University of Colorado, Denver
  • Patriic Gayle, Gay Men’s Health Collective, CIHRRC
  • Long COVID Physio (Catherine Thomson, Darren Brown)
  • Long COVID Ireland (Niamh Roche)
  • Patient-Led Research Collaborative (PLRC) (Lisa McCorkell, Hannah Wei, Hannah Davis)
  • Long COVID Support (Margaret O’Hara)
  • COVID Long Haulers Support Group Canada (Susie Goulding)
  • Rehabilitation in HIV Association (RHIVA)
  • Natalie St. Clair-Sullivan, Brighton and Sussex Hospital NHS Foundation Trust, UK
  • Jaime Vera, Brighton and Sussex University Hospital NHS Foundation Trust, UK

*Ambassadors of HIV in Motion – engaged in the Community of Practice and knowledge translation endeavours of HIV in Motion

Staff

  • George Da Silva (Engagement Coordinator)
  • Kiera McDuff (PT, Research Coordinator)

Trainees

  • Tizneem Jiancaro, PhD, Postdoctoral Research Fellow, University of Toronto
  • Nora Sahel-Gozin, MSc student, Institute of Health Policy, Management and Evaluation, University of Toronto

Join Us

The Episodic Disability and Rehabilitation Research Program provides opportunities for graduate trainees to build research capacity through mentoring and training in episodic disability and rehabilitation research in the context of chronic conditions.

Kelly is currently accepting graduate students in the IHPME and RSI.

This program of research is undertaken, in part, thanks to funding from the Canada Research Chairs program.

Contact: Kelly O’Brien can be reached by email at kelly.obrien@utoronto.ca.

Knowledge Translation

CIHRRC Logo

Dr. Kelly O’Brien’s research is conducted in partnership with the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC), an international network of over 100 stakeholders that Dr. O’Brien co-founded to address and translate evidence on common priorities in HIV and rehabilitation research.  With CIHRRC, Dr. O’Brien has led the planning and implementation of 4 International Forums on HIV and Rehabilitation Research, engaging over 400 stakeholders to translate evidence on HIV and rehabilitation while identifying emerging priorities to help guide future research in the field. Click here to access the links to speaker videos and presentations from the International Forums.

HIV in Motion logo

HIV in Motion Community of Practice
Dr. O’Brien co-leads a Community of Practice with Dr. Francisco Ibáñez-Carrasco (Dalla Lana School of Public Health) called HIV in Motion, with the HIV in Motion Study: Connecting Patient-Reported Outcomes with Health Interventions through an HIV Community of Practice.

Funding: The HIV in Motion study is funded by the Canadian Institutes of Health Research (CIHR) (CBR-FRN-170102).