Development of a Canadian Core Clinical Dataset to Support High-quality Care for Canadian Patients with Rheumatoid Arthritis

Abstract

Objective.To develop a Canadian Rheumatoid Arthritis Core Clinical Dataset (CAN-RACCD) to standardize documentation encouraging high-quality care.Methods.A set of candidate elements was drafted through meetings with 27 rheumatologists, researchers, and patients, and supplemented with focused literature reviews. A 3-round online-modified Delphi consensus process was held with rheumatologists (n = 26), allied health professionals (n = 7), and patients (n = 4); for the remainder there was no demographic information. Participants rated both the importance and feasibility of documenting candidate elements on a Likert scale of 1–9, contributed to an online moderated discussion, and re-rated the elements for inclusion in the CAN-RACCD. Elements were included in the final set if importance and feasibility ratings had a median score of ≥ 6.5 and there was no disagreement among participants.Results.Fifty-five individual elements in 10 subgroups were proposed to the Delphi participants: measures of RA disease activity; dates to calculate waiting times, disease duration, and disease-modifying antirheumatic drug start; comorbidities; smoking status; patient-reported pain and fatigue; physical function; laboratory and radiographic investigations; medications; clinical characteristics; and vaccines. All groups were included in the final set, with the exception of vaccination status. Additionally, 3 individual elements from the smoking subgroup were eliminated with a recommendation to record smoking status as never/ever/current, and 2 elements relating to coping and effect of fatigue were eliminated due to low feasibility and importance ratings.Conclusion.The CAN-RACCD stands as a national recommendation on which data elements should be routinely collected in clinical practice to monitor and support high-quality RA care.

Outcomes Reported in Prospective Long‐Term Observational Studies and Registries of Patients With Rheumatoid Arthritis Worldwide: An Outcome Measures in Rheumatology Systematic Review

“…Although they recommended measuring quality of life and function, specific subdomains were not proposed (5). Barber et al in Canada also proposed a core set of measures to be collected in clinical practice to improve quality of care, rather than for longitudinal outcome studies (6).

We identified 88 prospective long‐term observational studies and registries across the world reporting outcomes in patients with rheumatoid arthritis. Globally, there is significant heterogeneity of collected and reported outcomes across observational studies and registries, varying according to the type of registry (i.e., disease‐based versus therapy‐based). Patient‐centered outcomes measuring symptom burden and mental and social aspects of disease are not consistently collected and/or reported.

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“…A few studies examining the features of selected registries/LOS in RA have found significant heterogeneity in the outcomes collected, creating challenges in the comparability of findings across studies (1)(2)(3). Although there have been efforts to reduce the variability in data collection and analysis, a well-defined and universally accepted core set of outcomes to be measured in LOS that includes important patient-centered domains with specific relevance to long-term outcomes has yet to be agreed upon (4)(5)(6). The European Alliance of Associations for Rheumatology proposed a core set that primarily included pathophysiologic measures.…”

“…Although they recommended measuring quality of life and function, specific subdomains were not proposed (5). Barber et al in Canada also proposed a core set of measures to be collected in clinical practice to improve quality of care, rather than for longitudinal outcome studies (6).…”

Dimensões utilizadas na avaliação da qualidade organizacional dos serviços que atendem pessoas com tuberculose: uma revisão sistemática

“…The search was conducted in the electronic databases O projeto QualiTB visa desenvolver e validar metodologia de avaliação dos serviços de referência de nível secundário e terciário para tratamento ambulatorial da tuberculose no SUS, contribuindo com as iniciativas de monitoramento, avaliação e incremento da qualidade da atenção em tuberculose. Baseia-se em metodologias consagradas do campo [2,3] e na experiência anterior da equipe de pesquisa com serviços especializados em aids, Qualiaids [4][5][6] e da atenção básica, QualiAB [7,8].…”

“…Todos foram publicados em língua inglesa, e sete estão disponíveis em inglês e português. Os estudos se dedicaram à África(14), Ásia (13), América do Sul (10), Europa (2) e América do Norte(2). Seis estudos tinham abrangência intercontinental.Foram incluídos dois ensaios controlados randomizados[49][50], cinco revisões sistemáticas[36][51] incluindo três com metanálises [52][53][54], quatro caso controles [55][56][57][58]; quatro coortes [59][60][61][62], 10 estudos transversais [63-72], três quantitativos descritivos [73][74][75], uma revisão de literatura [76], cinco intervenções [77-80], oito estudos qualitativos [81-88] e quatro estudos de métodos mistos [89][90][91][92].…”