TY - JOUR
T1 - Development of the International Cardiac Rehabilitation Registry Including Variable Selection and Definition Process
AU - Chowdhury, Mohiul I.
AU - Turk-Adawi, Karam
AU - Samuel Babu, Abraham
AU - de Melo Ghisi, Gabriela Lime
AU - Seron, Pamela
AU - Yeo, Tee Joo
AU - Uddin, Jamal
AU - Heine, Martin
AU - Saldivia, Marianna Garcia
AU - Kouidi, Evangelia
AU - Sadeghi, Masoumeh
AU - Aljehani, Raghdah
AU - Grace, Sherry L.
N1 - Funding Information: The current study was co-funded by Qatar University, http://www.qu.edu.qa/, grant number (IRCC-2020-005), and York University, https://www.yorku.ca/ (no grant number), awarded to KTA and SLG. There was no commercial sponsor. None of the co-authors received payment or salary from the grant. The funders did not play any role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. Publisher Copyright: © 2022 The Author(s).
PY - 2022
Y1 - 2022
N2 - Introduction: The International Council of Cardiovascular Prevention and Rehabilitation (ICCPR) is developing a registry (ICRR) specifically for low-resource settings, where the burden of cardiovascular diseases is greatest and the need for program development highest. Herein we describe the development process, including the variable selection process. Method: Following a literature search on registry best practices, a stepwise model for ICRR development was identified. Then, based on recommendations by Core Outcome Set-STAndards for Development (COS-STAD), we underwent a process to identify variables. All available CR registries were contacted to request their data dictionaries, reviewed CR quality indicators and guideline recommendations, and searched for common data elements and core outcome sets; 35 unique variables (including patient-reported outcomes) were selected for potential inclusion. Twenty-one purposively-identified stakeholders and experts agreed to serve on a Delphi panel. Panelists rated the variables in an online survey, and suggested potential additional variables; A webcall was held to reach consensus on which to include/exclude. Next, panelists provided input to finalize each variable definition, and rated which associated indicators should be used for benchmarking in registry dashboards and a patient lay summary; a second consensus call was held. A 1-month public comment period ensued. Results: First, registry objectives and governance were approved by ICCPR, including data quality and access policies. The protocol was developed, for public posting. For variable selection, the overall mean rating was 6.1 ± 0.3/7; 12 were excluded, some of which were moved to a program survey, and others were revised. Two variables were added in an annual follow-up, resulting in 13 program and 16 patient-reported variables. Legal advice was sought to finalize ICRR agreements. Ethics approvals were obtained. Usability testing is now being initiated. Conclusion: It is hoped this will serve to harmonize CR assessment internationally and enable quality improvement in CR delivery in low-resource settings.
AB - Introduction: The International Council of Cardiovascular Prevention and Rehabilitation (ICCPR) is developing a registry (ICRR) specifically for low-resource settings, where the burden of cardiovascular diseases is greatest and the need for program development highest. Herein we describe the development process, including the variable selection process. Method: Following a literature search on registry best practices, a stepwise model for ICRR development was identified. Then, based on recommendations by Core Outcome Set-STAndards for Development (COS-STAD), we underwent a process to identify variables. All available CR registries were contacted to request their data dictionaries, reviewed CR quality indicators and guideline recommendations, and searched for common data elements and core outcome sets; 35 unique variables (including patient-reported outcomes) were selected for potential inclusion. Twenty-one purposively-identified stakeholders and experts agreed to serve on a Delphi panel. Panelists rated the variables in an online survey, and suggested potential additional variables; A webcall was held to reach consensus on which to include/exclude. Next, panelists provided input to finalize each variable definition, and rated which associated indicators should be used for benchmarking in registry dashboards and a patient lay summary; a second consensus call was held. A 1-month public comment period ensued. Results: First, registry objectives and governance were approved by ICCPR, including data quality and access policies. The protocol was developed, for public posting. For variable selection, the overall mean rating was 6.1 ± 0.3/7; 12 were excluded, some of which were moved to a program survey, and others were revised. Two variables were added in an annual follow-up, resulting in 13 program and 16 patient-reported variables. Legal advice was sought to finalize ICRR agreements. Ethics approvals were obtained. Usability testing is now being initiated. Conclusion: It is hoped this will serve to harmonize CR assessment internationally and enable quality improvement in CR delivery in low-resource settings.
KW - Benchmarking
KW - Cardiac rehabilitation
KW - Delphi technique
KW - Governance
KW - Patient-reported outcomes
KW - Registries
UR - http://www.scopus.com/inward/record.url?scp=85123738447&partnerID=8YFLogxK
U2 - https://doi.org/10.5334/GH.1091
DO - https://doi.org/10.5334/GH.1091
M3 - Article
C2 - 35174042
SN - 2211-8160
VL - 17
JO - Global Heart
JF - Global Heart
IS - 1
ER -