{
  "abstract": "Introduction Our aim is to develop a Framework of Measurement for people living with Long COVID and their caregivers for use in Long COVID research and clinical practice. Specifically, we will characterise evidence pertaining to outcome measurement and identify implementation considerations for use of outcome measures among adults and children living with Long COVID and their caregivers.Methods and analysis We will conduct a scoping study involving: (1) an evidence review and (2) a two-phased consultation, using methodological steps outlined by the Arksey and O’Malley Framework and Joanna Briggs Institute. We will answer the following question: What is known about outcome measures used to describe, evaluate or predict health outcomes among adults and children living with Long COVID and their caregivers? Evidence review: we will review peer review published and grey literature to identify existing outcome measures and their reported measurement properties with people living with Long COVID and their caregivers. We will search databases including MEDLINE, Embase, CINAHL, PsycINFO and Scopus for articles published since 2020. Two authors will independently review titles and abstracts, followed by full text to select articles that discuss or use outcome measures for Long COVID health outcomes, pertain to adults or children living with Long COVID and/or their caregivers and are based in research or clinical settings. We will extract data including article characteristics, terminology and definition of Long COVID, health outcomes assessed, characteristics of outcome measures, measurement properties and implementation considerations. We will collate and summarise data to establish a preliminary Framework of Measurement. Consultation phase 1: we will conduct an environmental scan involving a cross-sectional web-based questionnaire among individuals with experience using or completing outcome measures for Long COVID, to identify outcome measures not found in the evidence review and explore implementation considerations for outcome measurement in the context of Long COVID. Consultation phase 2: we will conduct focus groups to review the preliminary Framework of Measurement and to highlight implementation considerations for outcome measurement in Long COVID. We will analyse questionnaire and focus group data using descriptive and content analytical approaches. We will refine the Framework of Measurement based on the focus group consultation using community-engaged approaches with the research team.Ethics and dissemination Protocol approved by the University of Toronto Health Sciences Research Ethics Board (protocol #46503) for the consultation phases of the study. Outcomes will include a Framework of Measurement, to enhance measurement of health outcomes in Long COVID research and clinical practice. Knowledge translation will also occur in the form of publications and presentations.",
  "authors": [
    {
      "affiliations": [
        "Department of Physical Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada"
      ],
      "name": "Kiera McDuff"
    },
    {
      "affiliations": [
        "Department of Family Medicine and Emergency Medicine, Faculty of Medicine, Université de Montréal, Montreal, Quebec, Canada",
        "Faculty of Medicine and Health Sciences, School of Rehabilitation, Université de Sherbrooke, Sherbrooke, Quebec, Canada"
      ],
      "name": "Anne Bhéreur"
    },
    {
      "affiliations": [
        "Department of Physical Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada"
      ],
      "name": "Zeal Kadakia"
    },
    {
      "affiliations": [
        "Department of Medicine, The Ottawa Hospital, Ottawa, Ontario, Canada"
      ],
      "name": "Vicente F Corrales-Medina"
    },
    {
      "affiliations": [
        "Department of Physical Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Alberta, Canada"
      ],
      "name": "Douglas P Gross"
    },
    {
      "affiliations": [
        "School of Physical and Occupational Therapy, McGill University, Montreal, Quebec, Canada",
        "Respiratory Epidemiology and Clinical Research Unit, Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada"
      ],
      "name": "Tania Janaudis-Ferreira"
    },
    {
      "affiliations": [
        "Alberta Respiratory Centre, University of Alberta, Edmonton, Alberta, Canada",
        "Division of Pulmonary Medicine, Department of Medicine, University of Alberta and Alberta Health Services, Edmonton, Alberta, Canada",
        "Women and Children’s Health Research Institute, University of Alberta, Edmonton, Alberta, Canada"
      ],
      "name": "Grace Lam"
    },
    {
      "affiliations": [
        "Department of Medicine, The University of British Columbia, Vancouver, British Columbia, Canada",
        "Post-COVID-19 Interdisciplinary Clinical Care Network, Vancouver, British Columbia, Canada"
      ],
      "name": "Hiten Naik"
    },
    {
      "affiliations": [
        "Department of Psychology, University of Victoria, Victoria, British Columbia, Canada",
        "Rotman Research Institute, Baycrest Health Sciences Centre, Toronto, Ontario, Canada"
      ],
      "name": "Theone S E Paterson"
    },
    {
      "affiliations": [
        "Department of Respiratory Therapy, University of Manitoba, Winnipeg, Manitoba, Canada"
      ],
      "name": "Diana C Sanchez-Ramirez"
    },
    {
      "affiliations": [
        "Faculty of Nursing, Université Laval, Quebec City, Quebec, Canada",
        "VITAM Research Center on sustainable health, Université Laval, Quebec City, Quebec, Canada"
      ],
      "name": "Maxime Sasseville"
    },
    {
      "affiliations": [
        "Patient-Led Research Collaborative, Washington, District of Columbia, USA"
      ],
      "name": "Anisha Sekar"
    },
    {
      "affiliations": [
        "Alberta Respiratory Centre, University of Alberta, Edmonton, Alberta, Canada",
        "Department of Pediatrics, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada"
      ],
      "name": "Sunita Vohra"
    },
    {
      "affiliations": [
        "Toronto Rehabilitation Institute, University Health Network, Toronto, Ontario, Canada",
        "Department of Medicine, University Health Network, Toronto, Ontario, Canada"
      ],
      "name": "Mark Bayley"
    },
    {
      "affiliations": [
        "PossAbility: ME, Long COVID & Work, N/A, N/A, Canada"
      ],
      "name": "Susan Birch"
    },
    {
      "affiliations": [
        "Department of Anesthesia, McMaster University, Hamilton, Ontario, Canada",
        "Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Ontario, Canada"
      ],
      "name": "Jason W Busse"
    },
    {
      "affiliations": [
        "Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Ontario, Canada",
        "Rehabilitation Sciences Institute, University of Toronto, Toronto, Ontario, Canada",
        "Rehabilitation Science Research Network for COVID, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada"
      ],
      "name": "Jill I Cameron"
    },
    {
      "affiliations": [
        "Long COVID Physio, Calgary, Alberta, Canada"
      ],
      "name": "Cara Kaup"
    },
    {
      "affiliations": [
        "Department of Medicine, University Health Network, Toronto, Ontario, Canada",
        "Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada",
        "Department of Medicine, University of Toronto, Toronto, Ontario, Canada"
      ],
      "name": "Angela Cheung"
    },
    {
      "affiliations": [
        "Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Ontario, Canada",
        "Bruyère Health, Ottawa, Ontario, Canada"
      ],
      "name": "Katie Churchill"
    },
    {
      "affiliations": [
        "Kinesiology and Health Sciences, Faculty of Health, York University - Keele Campus, Toronto, Ontario, Canada"
      ],
      "name": "Heather Edgell"
    },
    {
      "affiliations": [
        "COVID Long-Haulers Support Group Canada, Cambridge, Ontario, Canada"
      ],
      "name": "Susie Goulding"
    },
    {
      "affiliations": [
        "Provincial Health Services Authority, Vancouver, British Columbia, Canada"
      ],
      "name": "Clayon Hamilton"
    },
    {
      "affiliations": [
        "Department of Physical Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada",
        "Rehabilitation Sciences Institute, University of Toronto, Toronto, Ontario, Canada"
      ],
      "name": "Susan Jaglal"
    },
    {
      "affiliations": [
        "Saskatchewan Centre for Patient-Oriented Research, Saskatoon, Saskatchewan, Canada"
      ],
      "name": "Pawan Kumar"
    },
    {
      "affiliations": [
        "Division of Nephrology, The University of British Columbia, Vancouver, British Columbia, Canada"
      ],
      "name": "Adeera Levin"
    },
    {
      "affiliations": [
        "Division of Care in Long Term Conditions, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King’s College London, London, UK",
        "Department of Paediatrics and Paediatric Infectious Diseases, Institute of Child’s Health, Sechenov University, Moscow, Russia",
        "Research and Clinical Center for Neuropsychiatry, Moscow, Russia"
      ],
      "name": "Daniel Munblit"
    },
    {
      "affiliations": [
        "Faculty of Medicine and Health Sciences, Université de Sherbrooke, Sherbrooke, Quebec, Canada"
      ],
      "name": "Florian Naye"
    },
    {
      "affiliations": [
        "Long COVID Support, London, UK"
      ],
      "name": "Margaret O’Hara"
    },
    {
      "affiliations": [
        "Faculty of Nursing, Université Laval, Quebec City, Quebec, Canada",
        "VITAM Research Center on sustainable health, Université Laval, Quebec City, Quebec, Canada"
      ],
      "name": "James Plaismond"
    },
    {
      "affiliations": [
        "Rehabilitation Science Research Network for COVID, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada"
      ],
      "name": "Mark Rutledge"
    },
    {
      "affiliations": [
        "Faculty of Nursing, Université Laval, Quebec City, Quebec, Canada",
        "VITAM Research Center on sustainable health, Université Laval, Quebec City, Quebec, Canada"
      ],
      "name": "Jean-Marc Wilfried Supper"
    },
    {
      "affiliations": [
        "Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada",
        "Temmy Latner Centre for Palliative Care, Sinai Health, Toronto, Ontario, Canada",
        "Department of Medicine, Sinai Health, Toronto, Ontario, Canada"
      ],
      "name": "Kieran Quinn"
    },
    {
      "affiliations": [
        "Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Ontario, Canada",
        "Rehabilitation Sciences Institute, University of Toronto, Toronto, Ontario, Canada",
        "St. John’s Rehab Research Program, Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada"
      ],
      "name": "Marina B Wasilewski"
    },
    {
      "affiliations": [
        "Realize, Toronto, Ontario, Canada"
      ],
      "name": "Annette Wilkins"
    },
    {
      "affiliations": [
        "Department of Physical Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada",
        "Rehabilitation Sciences Institute, University of Toronto, Toronto, Ontario, Canada",
        "Rehabilitation Science Research Network for COVID, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada",
        "Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada"
      ],
      "name": "Kelly K O’Brien"
    }
  ],
  "title": "Establishing a framework of measurement for use in Long COVID research and practice: protocol for a scoping review involving evidence review and consultation",
  "uid": "29d36c06-08e6-5ed7-9bbf-709d70cda000"
}