Evaluating Quality of Care for Rheumatoid Arthritis for the Population of Alberta Using System-level Performance Measures.

OBJECTIVE: We evaluated 4 national rheumatoid arthritis (RA) system-level performance measures (PM) in Alberta, Canada. METHODS: Incident and prevalent RA cases ≥ 16 years of age since 2002 were identified using a validated case definition applied in provincial administrative data. Performance was ascertained through analysis of health data between fiscal years 2012/13-2015/16. Measures evaluated were as follows: proportion of incident RA cases with a rheumatologist visit within 1 year of first RA diagnosis code (PM1); proportion of prevalent RA patients who were dispensed a disease-modifying antirheumatic drug (DMARD) annually (PM2); time from first visit with an RA code to DMARD dispensation and proportion of incident cases where the 14-day benchmark for dispensation was met (PM3); and proportion of patients seen in annual follow-up (PM4). RESULTS: There were 31,566 prevalent and 2730 incident RA cases (2012/13). Over the analysis period, the proportion of patients seen by a rheumatologist within 1 year of onset (PM1) increased from 55% to 63%; however, the proportion of RA patients dispensed DMARD annually (PM2) remained low at 43%. While the median time to DMARD from first visit date in people who received DMARD improved over time from 39 days to 28 days, only 38-41% of patients received treatment within the 14-day benchmark (PM3). The percentage of patients seen in yearly follow-up (PM4) varied between 73-80%. CONCLUSION: The existing Alberta healthcare system for RA is suboptimal, indicating barriers to accessing specialty care and treatment. Our results inform quality improvement initiatives required within the province to meet national standards of care.

Determination of Rheumatoid Arthritis Incidence and Prevalence in Alberta Using Administrative Health Data.

OBJECTIVE: The objective of the study was to estimate the incidence and prevalence of rheumatoid arthritis (RA) in Alberta using administrative health data. METHODS: We identified RA cases in patients 16 years and older by applying a national case definition to linked administrative health data (ie, hospital discharge abstract records, physician claims, and health insurance registry records) using a unique personal identifier. Incidence and prevalence are reported for the 2015-2016 fiscal year and a trend analysis from 2011-2012 to 2015-2016. Incidence and prevalence estimates were standardized using the 2011 Canadian census population. RESULTS: In 2015-2016, the overall crude incidence was 0.74 [95% confidence interval (CI): 0.71-0.77] per 1000 and crude prevalence was 1.08% (95% CI: 1.07-1.09). The women-to-men crude incidence and prevalence sex ratios were 2.04 and 2.19, respectively. People aged 65 to 79 years had the highest incidence of RA, and the highest prevalence was observed among those 80 years and older. From 2011-2012 to 2015-2016, the overall age-standardized incidence decreased [0.97 (95% CI: 0.94-1.01) to 0.79 (95% CI: 0.76-0.82) per 1000], whereas age-standardized prevalence remained constant [1.17 (95% CI: 1.15-1.18) to 1.18 (95% CI: 1.17-1.19)]. CONCLUSION: In Alberta, there was a decreasing trend in RA incidence over the study period, whereas prevalence was stable. These estimates, combined with clinical data, will be used to measure system performance for quality improvement and to inform simulation modeling for planning the expected demand for health services for patients living with RA.

Models of Arthritis Care: A Systems-level Evaluation of Acceptability as a Dimension of Quality of Care.

OBJECTIVE: To describe a systems-level baseline evaluation of central intake (CI) and triage systems in arthritis care within Alberta, Canada. The specific objectives were to (1) describe a process for systems evaluation for the provision of arthritis care; (2) report the findings of the evaluation for different clinical sites that provide arthritis care; and (3) identify opportunities for improving appropriate and timely access based on the findings of the evaluation. METHODS: The study used a convergent mixed methods design. Surveys and semistructured interviews were the main data collection methods. Participants were recruited through 2 rheumatology clinics and 1 hip and knee clinic providing CI and triage, and included patients, referring physicians, specialists, and clinic staff who experienced CI processes. RESULTS: A total of 237 surveys were completed by patients (n = 169), referring physicians (n = 50), and specialists (n = 18). Interviews (n = 25) with care providers and patients provided insights to the survey data. Over 95% of referring physicians agreed that the current process of CI was satisfactory. Referring physicians and specialists reported issues with the referral process and perceived support in care for wait-listed patients. Patients reported positive experiences with access and navigation of arthritis care services but expressed concerns around communication and receiving minimal support for self-management of their arthritis before and after receiving specialist care. CONCLUSION: This baseline evaluation of CI and triage for arthritis care indicates satisfaction with the service, but areas that require further consideration are referral completion, timely waiting lists, and further supporting patients to self-manage their arthritis.

Co-design of a patient experience survey for arthritis central intake: an example of meaningful patient engagement in healthcare design.

BACKGROUND: To describe the process of patient engagement to co-design a patient experience survey for people with arthritis referred to central intake. METHODS: We used a participatory design to engage with patients to co-design a patient experience survey that comprised three connected phases: 1) Identifying the needs of patients with arthritis, 2) Developing a set of key performance indicators, and 3) Determining the survey items for the patient experience survey. RESULTS: Patient recommendations for high quality healthcare care means support to manage arthritis, to live a meaningful life by providing the right knowledge, professional support, and professional relationship. The concept of integrated care was a core requirement from the patients' perspective for the delivery of high quality arthritis care. Patients experience with care was ranked in the top 10 of 28 Key Performance Indicators for the evaluation of central intake, with 95% of stakeholders rating it as 9/10 for importance. A stakeholder team, including Patient and Community Engagement Researchers (PaCER), mapped and rated 41 survey items from four validated surveys. The final patient experience survey had 23 items. CONCLUSION: The process of patient engagement to co-design a patient experience survey, for people with arthritis, identified aspects of care that had not been previously recognized. The linear organization of frameworks used to report patient engagement in research does not always capture the complexity of reality. Additional resources of cost, time and expertise for patient engagement in co-design activity are recognized and should be included, where possible, to ensure high quality data is captured.

Development of key performance indicators to evaluate centralized intake for patients with osteoarthritis and rheumatoid arthritis.

INTRODUCTION: Centralized intake is integral to healthcare systems to support timely access to appropriate health services. The aim of this study was to develop key performance indicators (KPIs) to evaluate centralized intake systems for patients with osteoarthritis (OA) and rheumatoid arthritis (RA). METHODS: Phase 1 involved stakeholder meetings including healthcare providers, managers, researchers and patients to obtain input on candidate KPIs, aligned along six quality dimensions: appropriateness, accessibility, acceptability, efficiency, effectiveness, and safety. Phase 2 involved literature reviews to ensure KPIs were based on best practices and harmonized with existing measures. Phase 3 involved a three-round, online modified Delphi panel to finalize the KPIs. The panel consisted of two rounds of rating and a round of online and in-person discussions. KPIs rated as valid and important (≥7 on a 9-point Likert scale) were included in the final set. RESULTS: Twenty-five KPIs identified and substantiated during Phases 1 and 2 were submitted to 27 panellists including healthcare providers, managers, researchers, and patients in Phase 3. After the in-person meeting, three KPIs were removed and six were suggested. The final set includes 9 OA KPIs, 10 RA KPIs and 9 relating to centralized intake processes for both conditions. All 28 KPIs were rated as valid and important. CONCLUSIONS: Arthritis stakeholders have proposed 28 KPIs that should be used in quality improvement efforts when evaluating centralized intake for OA and RA. The KPIs measure five of the six dimensions of quality and are relevant to patients, practitioners and health systems.

Improved exercise performance in pediatric heart transplant recipients after home exercise training.

Pediatric heart transplant recipients have been shown to have reduced exercise performance. Studies of adult heart transplant recipients demonstrate improved endurance from regular aerobic exercise; however, this strategy has not been studied in children. We hypothesized that regular aerobic/strength training would improve exercise performance in children post-heart transplant. After an initial training session, an exercise protocol was performed at home for 12 wk, three days/wk. Aerobic exercise consisted of either running or use of an exercise bicycle to an established target HR for >or=20 min of a 30-min session for three days/wk. Subjects wore a HR monitor and kept a diary to monitor compliance. Two days/wk, strength training was performed with elastic bands to specifically exercise biceps and triceps groups for 15-20 min/session. Aerobic exercise capacity was assessed at baseline and post-training using the standard Bruce treadmill protocol. Strength was measured at baseline and post-intervention by dynamometer. Exercise and strength parameters at baseline and post-intervention were compared using paired student t-tests. Eleven subjects completed the 12-wk program, eight females and three males. The mean age at enrollment was 14.7 +/- 5.3 yr (8-25) and mean time from transplant was 5.26 +/- 5.34 yr (0.58-14.71). Endurance time and peak oxygen consumption improved significantly post-exercise; there was no difference in peak HR or systolic blood pressure. Strength improved in the triceps, quadriceps, and biceps groups. After a 12-wk in home exercise intervention, pediatric heart recipients had improved exercise endurance and strength. The protocol was safe and implemented at relatively low cost. Further study is warranted to determine if the intervention can be extended to more children and whether benefits after such a short-term intervention can be sustained.