Development and Evaluation of the International Council of Cardiovascular Prevention and Rehabilitation (ICCPR) Program Certification for Low-Resource Settings.

Background: Cardiac rehabilitation (CR) is a proven model of secondary prevention, but new sites, providing quality care, are needed in low-resource settings. This study (1) described the development of International Council of Cardiovascular Prevention and Rehabilitation's (ICCPR) Program Certification and (2a) tested its implementation, considering (b) appropriateness of quality standards for these settings. Methods: The Steering Committee finalized 13 standards, requiring 70% be met. They are assessed initially through International CR Registry (ICRR) program survey and patient data; if Certification appears possible, a two-hour virtual site assessment is arranged to corroborate. Standard operating procedures for Assessor training were developed. A multi-method pilot study was then undertaken with a quantitative (description of quality indicators) and qualitative (focus groups on MS Teams) component. ICRR sites with post-program data by April 2022 were invited to participate. Two team members independently analyzed focus group transcripts, using a deductive-thematic approach with NVIVO. Results: Five CR programs from the Eastern Mediterranean, South-East Asian and American regions participated. Upon application, with some data cleaning, initially four programs were eligible to proceed to virtual site assessment. Ultimately, all five programs were certified, each meeting a minimum of 12/13 standards (peak MET increase and program completion rate were not met by some centres). Four themes resulted from the two focus groups of 13 site data stewards: motivation and benefits (eg, international recognition, additional program resources), logistics (eg, communication, cost, site visit process), the standards and their assessment (eg, balance of rigor and feasibility), and suggestions for improvement (eg, website). Conclusion: ICCPR's Program Certification has been demonstrated to be feasible, rigorous, and acceptable. Standards are attainable in low-resource settings. Certified programs reap benefits including additional resources. This first international Certification is suitable for low-resource settings, to complement that from the American and European CR Societies.

Pilot testing of the International Council of Cardiovascular Prevention and Rehabilitation Registry.

The International Council of Cardiovascular Prevention and Rehabilitation developed an International Cardiac Rehabilitation (CR) Registry (ICRR) to support CR programs in low-resource settings to optimize care provision and patient outcomes. This study assessed implementation of the ICRR, site data steward experience with on-boarding and data entry, and patient acceptability. Multimethod observational pilot involves (I) analysis of ICRR data from three centers (Iran, Pakistan, and Qatar) from inception to May 2022, (II) focus group with on-boarded site data stewards (also from Mexico and India), and (III) semistructured interviews with participating patients. Five hundred sixty-seven patients were entered. Based on volumes at each program, 85.6% of patients were entered in ICRR. 99.3% patients approached consented to participate. The average time to enter data at pre- and follow-up assessments by source was 6.8-12.6 min. Of 22 variables preprogram, completion was 89.5%. Among patients with any follow-up data, of four program-reported variables, completion was 99.0% in program completers and 51.5% in none; of 10 patient-reported variables, completion was 97.0% in program completers and 84.8% in none. The proportion of patients with any follow-up data was 84.8% in program completers, with 43.6% of noncompleters having any data entered other than completion status. Twelve data stewards participated in the focus group. Main themes were valuable on-boarding process, data entry, process of engaging patients, and benefits of participation. Thirteen patients were interviewed. Themes were good understanding of the registry, positive experience providing data, and value of lay summary and eagerness for annual assessment. Feasibility and data quality of ICRR were demonstrated.

A Prospective Follow-Up Study on the Disease Course and Predictors of Poor Outcomes in a Random Population-Based Cohort of Newly Diagnosed Lupus Patients.

Background and objective Systemic lupus erythematosus (SLE) is one of the most devastating systemic autoimmune connective tissue diseases. There is a paucity of prospective data on Pakistani SLE patients, and in this prospective study, we aimed to investigate the disease course, clinical outcomes, and the predictors of poor outcomes in a random population-based cohort of newly diagnosed SLE patients (diagnosed within the last one year). Methods This was a prospective observational study carried out in the rheumatology department of the Fatima Memorial Hospital, Lahore. Lupus patients are regularly reviewed in our dedicated lupus clinic every one to three months. For the purpose of this study, a focus group of newly diagnosed patients (diagnosed within the last one year) attending our lupus clinic was identified and prospectively followed up for 12 months. A wide range of demographical and clinical parameters was recorded. The association of clinical variables with the progressive disease was determined using univariate and multivariate logistic regressions. Results Prospective data of 89 newly diagnosed SLE patients regularly attending our dedicated lupus clinic were reviewed. During the study period, (January 2021 through January 2022), these patients had multiple visits overall - median: five, minimum: three, and maximum: nine visits [interquartile range (IQR) 4-7]. All 89 patients had completed one year of follow-up. Of note, 46% of the cohort was noted to have an ongoing active disease during the majority of visits in the study period. On multiple logistic regression analysis, there was a significant association between ongoing active disease ("progressors") and low education status [odds ratio (OR): 2.81, 95% confidence interval (CI): 1.01-7.76, p=0.046], stress at home (OR: 5.8, 95% CI: 2.13-15.8, p=0.001), and hematologic manifestations (OR: 3.0, 95% CI: 1.08-8.32, p=0.03). Conclusions Almost half of our cohort of lupus patients demonstrated active disease manifestations throughout the one-year prospective follow-up, and these were found to be associated with low education status, stress at home, and hematological manifestations.

Stress at Home and Female Gender Are Significantly Associated With Non-adherence and Poor Illness Perception Among Patients With Rheumatoid Arthritis.

Aims We aimed to assess the level of non-adherence and poor illness perception among rheumatoid arthritis (RA) patients. Additionally, we examined their associations with clinical indicators and outcomes. Methods This was a cross-sectional study conducted using data collected at the time of patient enrolment in the Pakistan Registry of Rheumatic Diseases (PRIME) registry. A wide range of clinical variables was studied. To measure adherence, we used the Urdu version of the General Medication Adherence Scale (GMAS), which has recently been validated in RA patients. A Brief Illness Perception Questionnaire (BIPQ) was used to measure illness perception. Results The data of consecutive 320 RA patients were reviewed. Thirty-six percent of the cohort (n=116) was noted to have non-adherence. On multiple logistic regression analysis, a significant association of non-adherence was noted with moderate-to-severe stress (odds ratio {OR}: 1.85, confidence interval {CI}: 1.04-3.2), DAS-28 scores (OR: 1.83, CI: 1.52-2.21), Health Assessment Questionnaire (HAQ) scores (OR: 1.77, CI: 1.07-2.92), and deformed joint counts (OR: 1.30, CI: 1.15-1.46). Additionally, non-adherence due to "patient behavior" had a significant association with the male gender (OR: 0.48, CI: 0.26-0.87), unemployment (OR: 1.82, CI: 1.07-3.10), and stress at home (OR: 2.17, CI: 1.35-3.49). Twenty-six percent of the cohort (n=86) was noted to have the most negative illness perception, and on multiple logistic regression analysis, it was significantly associated with male gender (OR: 0.24, CI: 0.11-0.53), age of onset of arthritis (OR: 0.96, CI: 0.94-0.99), and worse HAQ scores (OR: 3.7, CI: 2.2-6.1). Conclusions Important adverse factors contributing to non-adherence and negative illness perception highlighted in this study were stress at home, female gender, and younger age of patients.