A Canadian Delphi panel defined a for a national Long COVID patient registry.
Evidence
This modified Delphi consensus study used three online survey rounds with 52 patients, caregivers, clinicians, and researchers to narrow 243 candidate elements to a 48-item dataset.
Caveat
The dataset reflects expert consensus rather than validation that these items improve registry completeness, care, or patient outcomes.
Simplified
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 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.
Key numbers
200
Survey Elements Reaching Consensus
Out of 243 initial survey elements proposed.
48
Final Items
Developed from expert consensus over three survey rounds.
52
Participants Completing All Rounds
From an initial interest of 159 individuals.
Full Text
We can’t show the full text here under this license.
Competing interests: GG is a member of the Long COVID Web and has received funding to support this study. In-kind support was received from the Saskatchewan Health Authority, Saskatchewan Centre for Patient-Oriented Research, Saskatchewan Health Quality Council, University of Saskatchewan and SPOR Support Unit Council. The members of the Delphi Steering and Advisory Groups are members of the Long COVID Web. All other authors have no competing interests to declare.
