Development of a minimum data set for long COVID: a Delphi study protocol.
Adelaide Amah, Pawan Kumar, Hammed Ejalonibu, Bansari Chavda, Alaa Aburub, Renee Greene, Daphne Kemp, Donna Ellen Frederick, Kathrina Mazurik, Long COVID Web, Sarah Slagerman, Donna Ioana Dumitrescu, Gary Groot
Author Information
Adelaide Amah: Research Department, Saskatchewan Health Authority, Saskatoon, Saskatchewan, Canada. ORCID
Pawan Kumar: Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Hammed Ejalonibu: Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Bansari Chavda: Department of Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Alaa Aburub: Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Renee Greene: Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Daphne Kemp: Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Donna Ellen Frederick: Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Kathrina Mazurik: Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada. ORCID
Sarah Slagerman: George & Fay Yee Centre for Healthcare Innovation, University of Manitoba, Winnipeg, Manitoba, Canada.
Donna Ioana Dumitrescu: Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada. ORCID
Gary Groot: Department of Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada gary.groot@usask.ca. ORCID
INTRODUCTION: Previous consensus-based long COVID research has focused on establishing research priorities, developing clinical definitions, core outcomes and a list of recommendations of patient-reported outcome measures that can be used to assess and characterise long COVID. Complementing and extending this work, the proposed study will bring together diverse knowledge users to prioritise concepts of care, quality of life and symptoms to inform a national patient registry on long COVID. METHODS AND ANALYSIS: We will conduct a Delphi process involving Canadians with lived experiences and/or professional expertise with long COVID (including clinicians, policymakers, caregivers and community leaders). A pool of long COVID survey questions has been established through an environmental scan; these questions were coded by topic and will be presented via a series of online, anonymous survey questionnaires to a diverse cohort of 100 participants. Over the course of three Delphi rounds, participants will prioritise and recommend topics related to care, quality of life and symptoms. We will use the prioritised topics to develop a list of core questions as a minimum data set to standardise data collection and inform a national patient registry on long COVID in Canada. ETHICS AND DISSEMINATION: This study has been approved by the University of Saskatchewan Behavioural Research Ethics Board (BEH #4296). Findings will be shared at national conferences and will be published in an open-access peer-reviewed journal. In addition, the minimum data set will be shared with key knowledge users as recommendations to inform a national long COVID patient registry.
