Multi-level strategies to improve equitable timely person-centred osteoarthritis care for diverse women: qualitative interviews with women and healthcare professionals

Abstract Background Women are more likely to develop osteoarthritis (OA), and have greater OA pain and disability compared with men, but are less likely to receive guideline-recommended management, particularly racialized women. OA care of diverse women, and strategies to improve the quality of their OA care is understudied. The purpose of this study was to explore strategies to overcome barriers of access to OA care for diverse women. Methods We conducted qualitative interviews with key informants and used content analysis to identify themes regarding what constitutes person-centred OA care, barriers of OA care, and strategies to support equitable timely access to person-centred OA care. Results We interviewed 27 women who varied by ethno-cultural group (e.g. African or Caribbean Black, Chinese, Filipino, Indian, Pakistani, Caucasian), age, region of Canada, level of education, location of OA and years with OA; and 31 healthcare professionals who varied by profession (e.g. family physician, nurse practitioner, community pharmacist, physio- and occupational therapists, chiropractors, healthcare executives, policy-makers), career stage, region of Canada and type of organization. Participants within and across groups largely agreed on approaches for person-centred OA care across six domains: foster a healing relationship, exchange information, address emotions, manage uncertainty, share decisions and enable self-management. Participants identified 22 barriers of access and 18 strategies to overcome barriers at the patient- (e.g. educational sessions and materials that accommodate cultural norms offered in different languages and formats for persons affected by OA), healthcare professional- (e.g. medical and continuing education on OA and on providing OA care tailored to intersectional factors) and system- (e.g. public health campaigns to raise awareness of OA, and how to prevent and manage it; self-referral to and public funding for therapy, greater number and ethno-cultural diversity of healthcare professionals, healthcare policies that address the needs of diverse women, dedicated inter-professional OA clinics, and a national strategy to coordinate OA care) levels. Conclusions This research contributes to a gap in knowledge of how to optimize OA care for disadvantaged groups including diverse women. Ongoing efforts are needed to examine how best to implement these strategies, which will require multi-sector collaboration and must engage diverse women

Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation

Stakeholder engagement has become widely accepted as a necessary component of guideline development and implementation. While frameworks for developing guidelines express the need for those potentially affected by guideline recommendations to be involved in their development, there is a lack of consensus on how this should be done in practice. Further, there is a lack of guidance on how to equitably and meaningfully engage multiple stakeholders. We aim to develop guidance for the meaningful and equitable engagement of multiple stakeholders in guideline development and implementation. METHODS: This will be a multi-stage project. The first stage is to conduct a series of four systematic reviews. These will (1) describe existing guidance and methods for stakeholder engagement in guideline development and implementation, (2) characterize barriers and facilitators to stakeholder engagement in guideline development and implementation, (3) explore the impact of stakeholder engagement on guideline development and implementation, and (4) identify issues related to conflicts of interest when engaging multiple stakeholders in guideline development and implementation. DISCUSSION: We will collaborate with our multiple and diverse stakeholders to develop guidance for multi-stakeholder engagement in guideline development and implementation. We will use the results of the systematic reviews to develop a candidate list of draft guidance recommendations and will seek broad feedback on the draft guidance via an online survey of guideline developers and external stakeholders. An invited group of representatives from all stakeholder groups will discuss the results of the survey at a consensus meeting which will inform the development of the final guidance papers. Our overall goal is to improve the development of guidelines through meaningful and equitable multi-stakeholder engagement, and subsequently to improve health outcomes and reduce inequities in health

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ABSTRACT. Objective. To develop a list of 5 tests or treatments used in rheumatology that have evidence indicating that they may be unnecessary and thus should be reevaluated by rheumatology healthcare providers and patients. Methods. Using the Delphi method, a committee of 16 rheumatologists from across Canada and an allied health professional generated a list of tests, procedures, or treatments in rheumatology that may be unnecessary, nonspecific, or insensitive. Items with high content agreement and perceived relevance advanced to a survey of Canadian Rheumatology Association (CRA) members. CRA members ranked these top items based on content agreement, effect, and item ranking. A methodology subcommittee discussed the items in light of their relevance to rheumatology, potential effect on patients, and the member survey results. Five candidate items selected were then subjected to a literature review. A group of patient collaborators with rheumatic diseases also reviewed these items. Results. Sixty-four unique items were proposed and after 3 Delphi rounds, this list was narrowed down to 13 items. In the member-wide survey, 172 rheumatologists responded (36% of those contacted). The respondent characteristics were similar to the membership at large in terms of sex and geographical distribution. Five topics (antinuclear antibodies testing, HLA-B27 testing, bone density testing, bone scans, and bisphosphonate use) with high ratings on agreement and effect were chosen for literature review. Conclusion. The list of 5 items has identified starting points to promote discussion about practices that should be questioned to assist rheumatology healthcare providers in delivering high-quality care

Patient Preferences for Disease-modifying Antirheumatic Drug Treatment in Rheumatoid Arthritis: A Systematic Review

OBJECTIVE: To summarize patients’ preferences for disease modifying anti-rheumatic drug (DMARD) therapy in rheumatoid arthritis (RA). METHODS: We conducted a systematic review to identify English-language studies in adult RA patients that measured patients’ preferences for DMARDs or health states and treatment outcomes relevant to DMARD decisions. Study quality was assessed using a published quality assessment tool. Data on the importance of treatment attributes and associations with patient characteristics was summarized across studies. RESULTS: From 7951 abstracts, we included 36 studies from a variety of countries. Most studies were in patients with established RA and were rated as medium (n=19) or high quality (n=12). The methods to elicit preferences varied, with the most common being discrete choice experiment (DCE) (n=13). Despite the heterogeneity of attributes in DCE studies, treatment benefits (disease improvement) were usually more important than both non-serious (6 of 8 studies), and serious adverse events (5 of 8), and route of administration (7 of 9). Amongst the non-DCE studies, some found patients placed high importance on treatment benefits, while others (in patients with established RA) found patients were quite risk averse. Subcutaneous therapy was often, but not always preferred over intravenous therapy. Patient preferences were variable and commonly associated with sociodemographics. CONCLUSION: Overall, the results showed that many patients place a high value on treatment benefits over other treatment attributes including serious or minor side effects, cost or route of administration. The variability in patient preferences highlights the need to individualize treatment choices in RA.Canadian Institutes of Health Research (CIHR

The Application of Preference Elicitation Methods in Clinical Trial Design to Quantify Trade-Offs: A Scoping Review

Background and Objective: Patients can express preferences for different treatment options in a healthcare context, which can be measured with quantitative preference elicitation methods. Our objective was to conduct a scoping review to determine how preference elicitation methods have been used to design clinical trials. Methods: We conducted a scoping review to identify primary research studies involving any health condition, that used quantitative preference elicitation methods, including direct utility-based approaches, and stated preference studies, to value heath trade-offs in the context of clinical trial design. Studies were identified by screening existing systematic and scoping reviews, and a primary literature search in MEDLINE from 2010-present. We extracted study characteristics and the application of preference elicitation methods to clinical trial design according to the SPIRIT checklist from primary studies and summarized the findings descriptively. Results: We identified 18 eligible studies. The included studies applied patient preferences to 5 areas of clinical trial design: intervention selection (n=1), designing N-of-1 trials (n=1), outcome selection and weighting composite and ordinal outcomes (n=12), sample size calculations (n=2), and recruitment (n=2). Using preference elicitation methods led to different decisions being made, such as using preference-weighted composite outcomes instead of equally weighted composite outcomes. Conclusion: Preference elicitation methods are infrequently used to design clinical trials but may lead to changes throughout the trial which could impact the evidence generated. Future work should be done to consider measurement challenges and explore stakeholder perceptions.Canadian Institutes of Health Research (CIHR

Management of Inflammatory Arthritis in pregnancy: a National Cross-Sectional Survey of Canadian rheumatologists

Background: With improved therapies and management, more women with inflammatory arthritides (IA) are considering pregnancy. Our objective was to survey rheumatologists across Canada about their IA management in pregnancy to identify practice patterns and knowledge gaps. Methods: We administered an online survey with questions regarding medications for IA treatment including conventional synthetic disease modifying antirheumatic drugs (csDMARDs) and biologics/small molecules in planned and unplanned pregnancies. Email invitations were sent to members of the Canadian Rheumatology Association. We calculated responses frequencies and a priori set a cut-off of ≥75% to define consensus. Results: Ninety rheumatologists participated in the survey (20% participation rate); 57% have been practicing for > 10 years, 32% for ≤10 years, and 11% in training. There was consensus on discontinuation of 4 csDMARDs – cyclophosphamide (100%), leflunomide (98%), methotrexate (96%), and mycophenolate mofetil (89%) – in planned pregnancies but varied responses on when to discontinue them or what to do in unplanned pregnancies. Respondents agreed that 3 csDMARDs – azathioprine (84%), hydroxychloroquine (95%), and sulfasalazine (77%) – were safe to continue in planned and unplanned pregnancies. There was consensus with use of 4 biologics – adalimumab (81%), certolizumab (80%), etanercept (83%), and infliximab (76%) – in planned pregnancies but uncertainty on when they should be discontinued and their use in unplanned pregnancies. Conclusions: This national survey shows consensus among rheumatologists on the use of some csDMARDs and biologics/small molecules in IA patients planning pregnancy but varied knowledge on when to discontinue and what to do in unplanned pregnancies.Medicine, Faculty ofPharmaceutical Sciences, Faculty ofOther UBCNon UBCRheumatology, Division ofReviewedFacult

“Walking into the unknown…” key challenges of pregnancy and early parenting with inflammatory arthritis: a systematic review and thematic synthesis of qualitative studies

Background: To conduct a systematic review and thematic synthesis of qualitative studies on the pregnancy and early parenting experiences of patients with inflammatory arthritis (IA). Methods: We searched online databases for English-language, qualitative studies capturing the experiences of females with IA or their healthcare providers with pregnancy and/or early parenthood. We extracted findings from included studies and used thematic synthesis to develop descriptive and higher-order analytical themes. Results: Of 20 included studies, our analysis identified 5 analytical themes among patients and 3 among providers. Patients’ reproductive desires, the impact of IA on their ability to experience pregnancy, and the availability of information to guide preparedness informed their pregnancy decisions. Patients’ IA management, pregnancy expectations, and access to support influenced their reproductive experiences. Patients’ experiences seeking information and care revealed substantial gaps in reproductive care provision to patients with IA. Reproductive uncertainty related to IA placed a heavy burden on patients’ emotional and psychological wellbeing. Reproductive care provision was influenced by providers’ perceived professional responsibility to address patients’ reproductive goals, fears of negative outcomes, and capacity to harness patient trust, incorporate reproductive care into rheumatology practice and facilitate multi-disciplinary care coordination. Conclusions: Our review illuminated several barriers to experiencing pregnancy among patients with IA, particularly related to pregnancy planning support, availability of information, and care coordination among the patient’s healthcare team. To improve care, these barriers may be mitigated through the provision of relevant, practical, and consistent information as well as patient-centred multi-disciplinary approaches for managing pregnancy among patients with IA.Library, UBCMedicine, Faculty ofPharmaceutical Sciences, Faculty ofOther UBCNon UBCMedicine, Department ofObstetrics and Gynaecology, Department ofPopulation and Public Health (SPPH), School ofRheumatology, Division ofReviewedFacult

Patient preferences for maintenance therapy in Crohn's disease: A discrete-choice experiment.

OBJECTIVE:To quantify patient preferences for maintenance therapy of Crohn's disease and understand the impact on treatment selection. METHODS:We conducted a discrete-choice experiment in patients with Crohn's disease (n = 155) to measure the importance of attributes relevant to choosing between different medical therapies for maintenance of Crohn's disease. The attributes included efficacy and withdrawals due to adverse events, as well as dosing and other rare risks of treatment. From the discrete-choice experiment we estimated the part-worth (importance) of each attribute level, and explored preference heterogeneity through latent class analysis. We then used the part-worths to apply weights across each outcome from a prior network meta-analysis to estimate patients' preferred treatment in pairwise comparisons and for the overall group of treatments. RESULTS:The discrete-choice experiment revealed that maintaining remission was the most important attribute. Patients would accept a rare risk of infection or cancer for a 14% absolute increased chance of remission. Latent class analysis demonstrated that 45% of the cohort was risk averse, either to adverse events or requiring a course of prednisone. When these preferences were used in modelling studies to compare pairs of treatments, there was a ≥ 78% probability that all biologic treatments were preferred to azathioprine and methotrexate, based on the balance of benefits and harms. When comparing all treatments, adalimumab was preferred by 53% of patients, who were motivated by efficacy, and vedolizumab was preferred by 30% who were driven by the preference to avoid risks. However, amongst biologic treatment options, there was considerable uncertainty regarding the preferred treatment at the individual patient level. CONCLUSION:Patients with Crohn's disease from our population were, on average, focused on the benefits of treatment, supporting intensive treatment approaches aimed at maintaining remission. Important preference heterogeneity was identified, however, highlighting the importance of shared decision making when selecting treatments