Development of a minimum data set for long COVID: a Delphi study protocol
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 exten...
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| Format: | Article |
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BMJ Publishing Group
2024-11-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/14/11/e090304.full |
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| author | Lisa Lix Pawan Kumar Simon Décary Kiran Pohar Manhas Andrea Gruneir Gary Groot Alison Hoens Gayle Halas Angela Cheung Kieran Quinn Michelle Kho Adelaide Amah Hammed Ejalonibu Bansari Chavda Alaa Aburub Renee Greene Daphne Kemp Donna Ellen Frederick Kathrina Mazurik Sarah Slagerman Donna Ioana Dumitrescu Anne Bhereur Caren Cao Grace Lam Candace McNaughton Kadia Saint-Onge Diana Sanchez-Ramirez |
| author_facet | Lisa Lix Pawan Kumar Simon Décary Kiran Pohar Manhas Andrea Gruneir Gary Groot Alison Hoens Gayle Halas Angela Cheung Kieran Quinn Michelle Kho Adelaide Amah Hammed Ejalonibu Bansari Chavda Alaa Aburub Renee Greene Daphne Kemp Donna Ellen Frederick Kathrina Mazurik Sarah Slagerman Donna Ioana Dumitrescu Anne Bhereur Caren Cao Grace Lam Candace McNaughton Kadia Saint-Onge Diana Sanchez-Ramirez |
| author_sort | Lisa Lix |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-b1ed314d2d8544bfbc95f866c598c21a |
| institution | DOAJ |
| issn | 2044-6055 |
| language | English |
| publishDate | 2024-11-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-b1ed314d2d8544bfbc95f866c598c21a2025-08-20T02:50:09ZengBMJ Publishing GroupBMJ Open2044-60552024-11-01141110.1136/bmjopen-2024-090304Development of a minimum data set for long COVID: a Delphi study protocolLisa LixPawan Kumar0Simon DécaryKiran Pohar ManhasAndrea GruneirGary Groot1Alison HoensGayle HalasAngela CheungKieran QuinnMichelle KhoAdelaide Amah2Hammed Ejalonibu3Bansari Chavda4Alaa Aburub5Renee Greene6Daphne Kemp7Donna Ellen Frederick8Kathrina Mazurik9Sarah Slagerman10Donna Ioana Dumitrescu11Anne BhereurCaren CaoGrace LamCandace McNaughtonKadia Saint-OngeDiana Sanchez-Ramirez2 Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada4 Department of Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada1 Research Department, Saskatchewan Health Authority, Saskatoon, Saskatchewan, Canada2 Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada4 Department of Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada2 Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada2 Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada2 Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada2 Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada2 Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada6 George & Fay Yee Centre for Healthcare Innovation, University of Manitoba, Winnipeg, Manitoba, Canada2 Saskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, CanadaIntroduction 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.https://bmjopen.bmj.com/content/14/11/e090304.full |
| spellingShingle | Lisa Lix Pawan Kumar Simon Décary Kiran Pohar Manhas Andrea Gruneir Gary Groot Alison Hoens Gayle Halas Angela Cheung Kieran Quinn Michelle Kho Adelaide Amah Hammed Ejalonibu Bansari Chavda Alaa Aburub Renee Greene Daphne Kemp Donna Ellen Frederick Kathrina Mazurik Sarah Slagerman Donna Ioana Dumitrescu Anne Bhereur Caren Cao Grace Lam Candace McNaughton Kadia Saint-Onge Diana Sanchez-Ramirez Development of a minimum data set for long COVID: a Delphi study protocol BMJ Open |
| title | Development of a minimum data set for long COVID: a Delphi study protocol |
| title_full | Development of a minimum data set for long COVID: a Delphi study protocol |
| title_fullStr | Development of a minimum data set for long COVID: a Delphi study protocol |
| title_full_unstemmed | Development of a minimum data set for long COVID: a Delphi study protocol |
| title_short | Development of a minimum data set for long COVID: a Delphi study protocol |
| title_sort | development of a minimum data set for long covid a delphi study protocol |
| url | https://bmjopen.bmj.com/content/14/11/e090304.full |
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