Strategies for developing and implementing a rheumatoid arthritis healthcare quality framework: a thematic analysis of perspectives from arthritis stakeholders

Objectives To obtain stakeholder perspectives to inform the development and implementation of a rheumatoid arthritis (RA) healthcare quality measurement framework.Design Qualitative study using thematic analysis of focus groups and interviews.Setting Arthritis stakeholders from across Canada including healthcare providers, persons living with RA, clinic managers and policy leaders were recruited for the focus groups and interviews.Participants Fifty-four stakeholders from nine provinces.Interventions Qualitative researchers led each focus group/interview using a semistructured guide; the digitally recorded data were transcribed verbatim. Two teams of two coders independently analysed the transcripts using thematic analysis.Results Perspectives on the use of different types of measurement frameworks in healthcare were obtained. In particular, stakeholders advocated for the use of existing healthcare frameworks over frameworks developed in the business world and adapted for healthcare. Persons living with RA were less familiar with specific measurement frameworks, however, they had used existing online public forums for rating their experience and quality of healthcare provided. They viewed a standardised framework as potentially useful for assisting with monitoring the care provided to them individually. Nine guiding principles for framework development and 13 measurement themes were identified. Perceived barriers identified included access to data and concerns about how measures in the framework were developed and used. Effective approaches to framework implementation included having sound knowledge translation strategies and involving stakeholders throughout the measurement development and reporting process. Clinical models of care and health policies conducive to outcome measurement were highlighted as drivers of successful measurement initiatives.Conclusion These important perspectives will be used to inform a healthcare quality measurement framework for RA

Development and validation of the RACER (Readiness for Adult Care in Rheumatology) transition instrument in youth with juvenile idiopathic arthritis

Background Current evidence suggests that many adolescents with juvenile idiopathic arthritis (JIA) do not successfully transfer to adult care, which can result in adverse health outcomes. Although a growing number of clinical programs have been designed to support healthcare transition, there is a lack of psychometrically sound instruments to evaluate their impact on development of transition-related knowledge and skills in youth with JIA. The purpose of this study was to develop and validate RACER (Readiness for Adult Care in Rheumatology), a self-administered instrument designed to measure stages of readiness for key transition-related skills in adolescents with JIA. Methods A phased approach was used to develop and evaluate the validity and reliability of RACER. Phase 1 A was a consensus conference with 19 key stakeholders to inform instrument domains and items. Phase 1B determined initial content validity using a sample of 30 adolescents with JIA and 15 clinical and research experts. Finally, Phase 2 was a prospective cohort study with repeated measures to evaluate the internal consistency, test-retest reliability, construct validity and responsiveness of the instrument within a sample of adolescents with JIA. Results In Phase 1 A, initial item generation yielded a total of 242 items across six domains from the consensus conference, which was subsequently reduced to a 32-item instrument. Phase 1B established the content validity of the instrument in adolescents with JIA. In the Phase 2 study, with a sample of 96 adolescents, the RACER instrument exhibited good internal consistency in five of its six subscales (Cronbach’s α > 0.7), and strong test-retest reliability between the first two administrations (ICC = 0.83). It also showed robust convergent validity by highly correlating with measures of self-management (SMSAG, rho = 0.73) and transition (TRANSITION-Q, rho = 0.76). The RACER was not correlated with unrelated measures (discriminant validity; PedsQL, rho = 0.14). The RACER scores increased significantly over time as expected, supporting measure responsiveness. Conclusions The RACER is a reliable and valid instrument which is sensitive to change for assessing transition readiness in adolescents with JIA.Medicine, Faculty ofNon UBCMedicine, Department ofRheumatology, Division ofReviewedFacult

Clinical and Serological Features of Patients Referred through a Rheumatology Triage System because of Positive Antinuclear Antibodies

<div><p>Background</p><p>The referral of patients with positive anti-nuclear antibody (ANA) tests has been criticized as an inappropriate use of medical resources. The utility of a positive ANA test in a central triage (CT) system was studied by determining the autoantibody profiles and clinical diagnoses of patients referred to rheumatologists through a CT system because of a positive ANA test.</p><p>Methods</p><p>Patients that met three criteria were included: (1) referred to Rheumatology CT over a three year interval; (2) reason for referral was a “positive ANA”; (3) were evaluated by a certified rheumatologist. The CT clinical database was used to obtain demographic and clinical information and a serological database was used to retrieve specific ANA and/or extractable nuclear antigen (ENA) test results. Clinical information was extracted from the consulting rheumatologist's report.</p><p>Results</p><p>15,357 patients were referred through the CT system; 643 (4.1%) of these because of a positive ANA and of these 263 (40.9%) were evaluated by a certified rheumatologist. In 63/263 (24%) of ANA positive patients, the specialist provided a diagnosis of an ANA associated rheumatic disease (AARD) while 69 (26.2%) had no evidence of any disease; 102 (38.8%) had other rheumatologic diagnoses and 29 (11%) had conditions that did not meet AARD classification criteria. Of ANA positive archived sera, 15.1% were anti-DFS70 positive and 91.2% of these did not have an AARD.</p><p>Conclusions</p><p>This is the first study to evaluate the serological and clinical features of patients referred through a CT system because of a positive ANA. The spectrum of autoantibody specificities was wide with anti-Ro52/TRIM21 being the most common autoantibody detected. Approximately 15% of referrals had only antibodies to DFS70, the vast majority of which did not have clinical evidence for an AARD. These findings provide insight into the utility of autoantibody testing in a CT system.</p></div

Commonalities and differences in the implementation of models of care for arthritis: key informant interviews from Canada

Background: Timely access to effective treatments for arthritis is a priority at national, provincial and regional levels in Canada due to population aging coupled with limited health human resources. Models of care for arthritis are being implemented across the country but mainly in local contexts, not from an evidence-informed policy or framework. The purpose of this study is to examine existing models of care for arthritis in Canada at the local level in order to identify commonalities and differences in their implementation that could point to important considerations for health policy and service delivery. Methods: Semi-structured key informant interviews were conducted with 70 program managers and/or care providers in three Canadian provinces identified through purposive and snowball sampling followed by more detailed examination of 6 models of care (two per province). Interviews were transcribed verbatim and analyzed thematically using a qualitative descriptive approach. Results: Two broad models of care were identified for Total Joint Replacement and Inflammatory Arthritis. Commonalities included lack of complete and appropriate referrals from primary care physicians and lack of health human resources to meet local demands. Strategies included standardized referrals and centralized intake and triage using non-specialist health care professionals. Differences included the nature of the care and follow-up, the role of the specialist, and location of service delivery. Conclusions: Current models of care are mainly focused on Total Joint Replacement and Inflammatory Arthritis. Given the increasing prevalence of arthritis and that published data report only a small proportion of current service delivery is specialist care; provision of timely, appropriate care requires development, implementation and evaluation of models of care across the continuum of care.Medicine, Faculty ofNon UBCPhysical Therapy, Department ofReviewedFacult

Autoantibody Specificities of the 116 patients in the ARC with a positive anti-ENA^*.

<p>Note: 116/263 patients referred with a positive ANA had a detectable ENA autoantibody. Some patients had more than 1 autoantibody, hence % totals will not  = 100.</p><p>*results available for 76 samples.</p><p>**Clinical diagnoses associated with specific autoantibodies see Table S1 in <a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0093812#pone.0093812.s001" target="_blank">File S1</a>.</p