| Literature DB >> 35174042 |
Mohiul I Chowdhury1,2, Karam Turk-Adawi3, Abraham Samuel Babu4, Gabriela Lime de Melo Ghisi2, Pamela Seron5, Tee Joo Yeo6, Jamal Uddin7, Martin Heine8, Marianna Garcia Saldivia9, Evangelia Kouidi10, Masoumeh Sadeghi11, Raghdah Aljehani12, Sherry L Grace1,2.
Abstract
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.Entities:
Keywords: Benchmarking; Cardiac rehabilitation; Delphi technique; governance; patient-reported outcomes; registries
Mesh:
Year: 2022 PMID: 35174042 PMCID: PMC8757385 DOI: 10.5334/gh.1091
Source DB: PubMed Journal: Glob Heart ISSN: 2211-8160
Figure 3ICRR Patient-Related Indicator Reporting Dashboard.
Legend: ICRR = International Cardiac Rehabilitation Registry.
Note: Dummy data are shown.
Initial variable list with overall ratings and inclusion decisions.
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| VARIABLE NUMBER IN DATA DICTIONARY (PROGRAM SURVEY) | VARIABLE NAME (ASSESSMENT POINT) | OVERALL RATING MEAN ± STANDARD DEVIATION | INCLUSION DECISION |
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| 1 | Year of birth ǁ (pre) | 6.7 ± 0.7 | I |
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| 2 | Sex ǁ (pre) | 6.8 ± 0.4 | I |
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| 4 | Referral diagnoses (pre) | 6.7 ± 0.6 | I |
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| 5 | Referral intervention(s) (pre) | 6.5 ± 0.8 | I |
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| Referral date* | 6.0 ± 1.0 | E | |
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| 3 | Initial assessment date (pre) | 6.2 ± 0.9 | I |
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| 7, 27, 29 | Interim event(s)/procedures/vital status* (post) | 6.0 ± 0.8 | R |
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| 7 | Premature program termination/Program Completion‡ (post) | 6.4 ± 0.9 | I |
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| (28, 29) | Number of prescribed exercise sessions | 6.2 ± 1.0 | P |
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| 6 | Number of completed exercise sessions‡ (post) | 6.4 ± 0.8 | I |
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| (25) | Resistance training | 6.2 ± 0.9 | P |
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| (25) | Education provided | 6.4 ± 0.8 | P |
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| (25) | Stress management provided | 6.1 ± 0.9 | P |
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| (25) 23 | Cardiac medications†‡˄ | 6.7 ± 0.7 | P, R |
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| 8 | Low-density lipoprotein˄ (pre, post, annual) | 6.2 ± 1.2 | I |
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| 9 | Waist circumference*‡˄ (pre, post, annual) | 5.9 ± 1.1 | R |
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| 10 | Systolic blood pressure‡˄ (pre, post, annual) | 6.4 ± 0.7 | I |
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| 10 | Diastolic blood pressure˄ (pre, post, annual) | 6.4 ± 0.7 | I |
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| 11 | Peak METs‡ (pre, post) | 6.1 ± 1.0 | I |
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| 13 | Marital status* (pre) | 5.6 ± 1.3 | R† |
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| 14 | Educational attainment* (pre) | 6.0 ± 1.1 | I† |
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| 24 | Work status (pre, post, annual) | 6.1 ± 0.9 | I† |
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| 15 | Comorbidities (pre) | 6.4 ± 0.6 | I† |
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| 16 | Economic security* (pre) | 5.6 ± 1.1 | R† |
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| 17 | Medication coverage* (pre) | 5.8 ± 1.3 | R† |
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| – | Health literacy* | 5.9 ± 1.1 | E |
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| 18 | Quality of life‡˄ (pre, post, annual) | 6.1 ± 0.8 | I† |
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| 19 | Depressive symptoms˄ (pre, post, annual) | 6.3 ± 0.7 | I† |
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| 20 | Fruit and vegetable consumption*‡˄ (pre, post, annual) | 6.0 ± 0.8 | I† |
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| – | Processed food consumption* | 5.3 ± 1.0 | E |
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| 21 | Physical activity‡˄ (pre, post, annual) | 6.1 ± 1.3 | I† |
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| 22 | Tobacco use‡ (pre, post, annual) | 6.8 ± 0.5 | I† |
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| 25 | Cardiac knowledge‡˄ (post) | 6.1 ± 1.0 | I† |
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| – | Program satisfaction* | 5.9 ± 0.9 | E |
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| 26 | Cardiac rehabilitation model (post) | 6.1 ± 1.0 | I† |
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I, included; E, excluded, R, revised, P, moved to program survey (one time).
* Discussed during consensus call.
† Patient report.
ǁ Mandatory variables.
‡ Included in ICRR dashboards.
˄ Included in patient lay summary.
Indicators selected for ICRR dashboards based on variables chosen by Delphi panelists.
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| PROGRAM-RELATED | VARIABLE #† | PATIENT-RELATED§ | VARIABLE #† | |
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| Proportion of patients completing the program (i.e., attended post-program assessment) [ | 7 | Change in minutes of moderate or vigorous-intensity physical activity per week from pre- to post-program. | 21 |
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| Change in peak METs from pre- to post-program. | 11 | Change in number of servings of fruits and vegetables per day from pre- to post-program. | 20 |
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| Change in systolic blood pressure from pre- to post-program. | 10 | Change in mean quality of life score from pre- to post-program. | 18 |
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| Change in body mass index from pre- to post-program. | 9 | Proportion of patients knowing what to do if they have chest pain post-program. | 25 |
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| Change in % of patients reporting current tobacco use from pre- to post-program. | 22 | Proportion of patients knowing how to control their lipids post-program. | 25 |
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| Number of supervised CR sessions attended*. | 6 | Mean medication adherence (1–5) post-program. | 23 |
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ICRR = International Cardiac Rehabilitation Registry.
* Not compared to other sites, as number prescribed varies by program; only compared to own program first 6 months in ICRR versus after 6 months.
† As per data dictionary found in Appendix 2.
§ Shown in Figure 3.
Note: Exclusions not shown, but are available from the corresponding author.