{
  "abstract": "Objectives To develop survey items for a national patient registry on Long COVID using a modified Delphi process.Design This study was based on a modified Delphi process involving three rounds of anonymous, online surveys to develop consensus on and prioritise survey elements to be included in a minimum dataset for use in a national patient registry in Canada. Initial Long COVID items were identified through an environmental scan of the literature.Setting This study focused on healthcare systems in Canada and was conducted online.Participants A panel of 52 experts (patients, caregivers, clinicians and researchers) participated in all three rounds of the online survey. These participants were recruited through the Long COVID Web network and word of mouth.Results In total, 243 survey elements related to care, quality of life and symptoms were included in round 1 of the survey. 200 reached consensus and moved to round 2 with two additional elements being developed based on open-ended responses. In round 2, participants ranked these survey elements and 34 advanced. In round 3, 33 survey elements met the threshold of consensus with one added a priori. The 33 survey elements were then used to develop a Long COVID minimum dataset, which consists of 48 items.Conclusions The findings affirm broad consensus for collecting data related to fatigue, post-exertional malaise, cardiovascular issues, respiratory problems and cognitive issues. This highlighted the desire for quality-of-life indicators and information related to care utilisation, quality and access.",
  "authors": [
    {
      "affiliations": [
        "University of Saskatchewan, Saskatoon, Saskatchewan, Canada"
      ],
      "name": "Kathrina Mazurik"
    },
    {
      "affiliations": [
        "Research, Saskatchewan Health Authority, Saskatoon, Saskatchewan, Canada"
      ],
      "name": "Adelaide Amah"
    },
    {
      "affiliations": [
        "University of Saskatchewan, Saskatoon, Saskatchewan, Canada",
        "Research Department, Saskatchewan Health Authority, Regina, Saskatchewan, Canada"
      ],
      "name": "Donna Ioana Dumitrescu"
    },
    {
      "affiliations": [
        "University of Saskatchewan, Saskatoon, Saskatchewan, Canada",
        "Saskatchewan Health Quality Council, Saskatoon, Saskatchewan, Canada"
      ],
      "name": "Hammed Ejalonibu"
    },
    {
      "affiliations": [
        "Community Health & Epidemiology, University of Saskatchewan College of Medicine, Saskatoon, Saskatchewan, Canada"
      ],
      "name": "Bansari Chavda"
    },
    {
      "affiliations": [
        "University of Saskatchewan, Saskatoon, Saskatchewan, Canada",
        "Saskatchewan Health Authority, Saskatoon, Saskatchewan, Canada"
      ],
      "name": "Daphne Kemp"
    },
    {
      "affiliations": [
        "Patient partner, Saskatoon, Saskatchewan, Canada"
      ],
      "name": "Donna Ellen Frederick"
    },
    {
      "affiliations": [
        "Patient partner, Saskatoon, Saskatchewan, Canada"
      ],
      "name": "Cindy Mclean"
    },
    {
      "affiliations": [
        "University of Sherbrooke, Sherbrooke, Quebec, Canada"
      ],
      "name": "Simon Décary"
    },
    {
      "affiliations": [
        "Department of Family Medicine, University of Alberta, Edmonton, Alberta, Canada",
        "Institute for Clinical Evaluative Sciences, Toronto, Ontario, Canada"
      ],
      "name": "Andrea Gruneir"
    },
    {
      "affiliations": [
        "Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada"
      ],
      "name": "Gayle Halas"
    },
    {
      "affiliations": [
        "Department of Physical Therapy, The University of British Columbia Faculty of Medicine, Vancouver, British Columbia, Canada"
      ],
      "name": "Alison Hoens"
    },
    {
      "affiliations": [
        "School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada"
      ],
      "name": "Michelle Kho"
    },
    {
      "affiliations": [
        "University of Manitoba, Winnipeg, Manitoba, Canada"
      ],
      "name": "Long COVID Web"
    },
    {
      "affiliations": [
        "Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada"
      ],
      "name": "Gary Groot"
    }
  ],
  "title": "Developing a minimum dataset for a national patient registry on Long COVID in Canada: a Delphi consensus-based study",
  "uid": "4b2bd7f6-af88-5d08-a9e6-14ea6724ab9d"
}