Experiences of self-care during the COVID-19 pandemic among individuals with rheumatoid arthritis: A qualitative study.

OBJECTIVES: This study aimed to explore the impact of the coronavirus disease 2019 (COVID-19) pandemic on self-care of individuals living with rheumatoid arthritis (RA). METHODS: Guided by a constructivist, qualitative design, we conducted one-to-one in-depth telephone interviews between March and October 2020 with participants with RA purposively sampled for maximum variation in age, sex and education, who were participating in one of two ongoing randomized-controlled trials. An inductive, reflexive thematic analysis approach was used. RESULTS: Twenty-six participants (aged 27-73 years; 23 females) in British Columbia, Canada were interviewed. We identified three themes: (1) Adapting to maintain self-care describes how participants took measures to continue self-care activities while preventing virus transmissions. While spending more time at home, some participants reported improved self-care. (2) Managing emotions describes resilience-building strategies such as keeping perspective, positive reframing and avoiding negative thoughts. Participants described both letting go and maintaining a sense of control to accommodate difficulties and emotional responses. (3) Changing communication with health professionals outlined positive experiences of remote consultations with health professionals, particularly if good relationships had been established prepandemic. CONCLUSION: The insights gained may inform clinicians and researchers on ways to support the self-care strategies of individuals with RA and other chronic illnesses during and after the COVID-19 pandemic. The findings reveal opportunities to further examine remote consultations to optimize patient engagement and care. PATIENT OR PUBLIC CONTRIBUTION: This project is jointly designed and conducted with patient partners in British Columbia, Canada. Patient partners across the United Kingdom also played in a key role in providing interpretations of themes during data analysis.

Comparison of patient and physician perspectives in the management of rheumatoid arthritis: results from global physician- and patient-based surveys.

BACKGROUND: In order to better understand the perspectives of patients and physicians regarding the treatment and management of rheumatoid arthritis (RA), we present and compare results from a patient-based and a physician-based survey developed by the RA NarRAtive advisory panel. METHODS: The RA NarRAtive initiative is directed by a global advisory panel of 39 healthcare providers and patient organization leaders from 17 countries. A survey of patients self-reporting a diagnosis of RA and a physician-based survey, designed by the advisory panel, were fielded online by Harris Poll from September 2014 to April 2016, and from August 2015 to October 2015, respectively. RESULTS: We present findings from 1805 patients whose RA was primarily managed by a rheumatologist, and 1736 physicians managing patients with RA. Results confirmed that RA carries a substantial disease burden; half of the patients surveyed reported stopping participation in certain activities as a result of their disease. While 90% of physicians were satisfied with their communications with their patients regarding RA treatment, 61% of patients felt uncomfortable raising concerns or fears with their physician. Of the patients providing responses, 52% felt that improved dialogue/discussion would optimize their RA management, and 68% of physicians wished that they and their patients talked more about their RA goals and treatment. Overall, 88% of physicians agreed that patients involved in making treatment decisions tend to be more satisfied with their treatment experience. CONCLUSION: The results of these surveys highlight the impact of RA on patients, and a discrepancy between patient and physician views on communication. Further research, focused on improving patient-physician dialogue, shared goal-setting, and treatment planning, is needed.

Impact of the COVID-19 Pandemic on People Living with Rheumatoid Arthritis: Experiences and Preferences in Accessing Healthcare Across Five Countries.

INTRODUCTION: The global coronavirus 2019 (COVID-19) pandemic created many challenges in healthcare provision. This study aimed to evaluate the global impact of the COVID-19 pandemic on people living with rheumatoid arthritis (RA). METHODS: The RA Narrative COVID-19 survey was conducted online among people with RA who resided in Brazil, Canada, France, Japan, and the US from August to September 2021. The survey examined disease management, healthcare access and experiences, and participant preferences for interactions with their doctor. RESULTS: Overall, 500 participants completed the survey: 100 each resided in Brazil, Canada, France, Japan, and the US. Emotional well-being was the aspect of disease management most reported to be negatively impacted by the pandemic (55% of participants); 'having more anxiety and/or stress' during the pandemic was the top factor that made controlling RA symptoms more difficult (49% of participants). In comparison, the top factor that made controlling RA symptoms easier was 'having a less busy schedule' (35% of participants). More participants had virtual appointments during versus pre-pandemic (53% vs. 13%, respectively) and participants were equally satisfied with the overall quality of care received via virtual and in-person appointments (76% of participants were 'satisfied' or 'very satisfied' with both). However, participants generally preferred in-person over virtual appointments, except for prescription refills, for which preferences were similar (39% vs. 36%, respectively). CONCLUSIONS: This survey suggests that the COVID-19 pandemic did negatively impact some aspects of disease management for people living with RA but had positive impacts on the utilization of virtual care. Although participants generally preferred in-person appointments, these results position virtual care as an appropriate means for routine follow-ups.

Rheumatoid Arthritis Care Experiences of Black People Living in Canada: A Qualitative Study to Inform Health Service Improvements.

OBJECTIVE: To understand experiences related to rheumatoid arthritis (RA) care and propose service-level strategies to reduce and mitigate inequities for Black people living in Canada. METHODS: Purposive and respondent driven sampling was used to recruit participants for qualitative interviews to explore population factors relevant to RA care and challenges and facilitators for access to health care services, medications, and enacting preferred treatment plans. Thematic analysis was conducted using the Braun and Clarke method with inductive and deductive coding and critical race theory guiding analysis. RESULTS: Six women and two men with RA, and two women health care professionals, expressed how their racial identity contributed to their understanding of RA, preferences for treatment, and outcome goals. Health care access was influenced by financial limitations and racism, by exclusion, and discrimination, and also by cultural norms in seeking health care and awareness about RA within the Black community. Participants experienced health system fragmentation and were not connected to ancillary supports. Treatment decision-making was influenced by the legacy of oppression and medical experimentation on Black people and the predominance of biomedical approaches emphasized by health care providers. Holistic and cultural approaches, provided in safe, trauma-informed care environments, with flexibility in service models, are desired. Partnerships between arthritis care services and Black community organizations are proposed to promote community awareness and knowledge about arthritis and provide support mechanisms for patients within their community. CONCLUSION: Our study highlights unique considerations based on race and ethnicity and provides suggestions for arthritis care to mitigate inequities for Black people living with arthritis.

Decision-Making Around COVID-19 Public Health Measures and Implications for Self-Care Activities: Experiences of Persons With Rheumatoid Arthritis.

OBJECTIVE: We aimed to advance understanding of how persons with rheumatoid arthritis (RA) experience decision-making about adopting public health measures during the COVID-19 pandemic. METHODS: Persons living with RA partnered throughout this nested qualitative study. One-to-one semistructured telephone interviews were conducted with participants with RA between December 2020 and December 2021. They were strategically sampled from a randomized controlled trial that was underway to test a physical activity counseling intervention. Analysis was guided by reflexive thematic analysis. RESULTS: Thirty-nine participants (aged 26-86 years; 36 women) in British Columbia, Canada were interviewed. We developed three themes. Participants described how their decision-making about public health measures related to 1) "upholding moral values of togetherness" because decisions were intertwined with moral values of neighborliness and reciprocity. Some adapted their self-care routines to uphold these moral values; 2) "relational autonomy-supports and challenges," because they sometimes felt supported and undermined in different relational settings (eg, by family, local community, or provincial government); and 3) "differing trust in information sources," in which decisions were shaped by the degree of faith they had in various information sources, including their rheumatologists. CONCLUSION: Across themes, experiences of decision-making about public health measures during the pandemic were embedded with moral concepts of solidarity, autonomy, and trust, with implications for how persons with RA chose and sustained their self-care activities. Insights gained help sensitize researchers and clinicians to moral issues experienced by persons with RA, which may inform support for self-care activities during and after the pandemic.

Effect of Immunosuppressive or Immunomodulatory Agents on Severe COVID-19 Outcomes: A Population-Based Cohort Study.

OBJECTIVE: We estimated the association between immunosuppressive and immunomodulatory agent (IIA) exposure and severe COVID-19 outcomes in a population-based cohort study. METHODS: Participants were 18 years or older, tested positive for SARS-CoV-2 between February 6, 2020, and August 15, 2021, and were from administrative health data for the entire province of British Columbia, Canada. IIA use within 3 months prior to positive SARS-CoV-2 test included conventional disease-modifying antirheumatic drugs (antimalarials, methotrexate, leflunomide, sulfasalazine, individually), immunosuppressants (azathioprine, mycophenolate mofetil/mycophenolate sodium [MMF], cyclophosphamide, cyclosporine, individually and collectively), tumor necrosis factor inhibitor (TNFi) biologics (adalimumab, certolizumab, etanercept, golimumab, infliximab, collectively), non-TNFi biologics or targeted synthetic disease-modifying antirheumatic drugs (tsDMARDs) (rituximab separately from abatacept, anakinra, secukinumab, tocilizumab, tofacitinib and ustekinumab collectively), and glucocorticoids. Severe COVID-19 outcomes were hospitalizations for COVID-19, ICU admissions, and deaths within 60 days of a positive test. Exposure score-overlap weighting was used to balance baseline characteristics of participants with IIA use compared with nonuse of that IIA. Logistic regression measured the association between IIA use and severe COVID-19 outcomes. RESULTS: From 147,301 participants, we identified 515 antimalarial, 573 methotrexate, 72 leflunomide, 180 sulfasalazine, 468 immunosuppressant, 378 TNFi biologic, 49 rituximab, 144 other non-TNFi biologic or tsDMARD, and 1348 glucocorticoid prescriptions. Risk of hospitalizations for COVID-19 was significantly greater for MMF (odds ratio [95% CI]): 2.82 [1.81-4.40], all immunosuppressants: 2.08 [1.51-2.87], and glucocorticoids: 1.63 [1.36-1.96], relative to nonuse. Similar outcomes were seen for ICU admission and MMF: 2.52 [1.34-4.74], immunosuppressants: 2.88 [1.73-4.78], and glucocorticoids: 1.86 [1.37-2.54]. Only glucocorticoids use was associated with a significant increase in 60-day mortality: 1.58 [1.21-2.06]. No other IIAs displayed statistically significant associations with severe COVID-19 outcomes. CONCLUSION: Current use of MMF and glucocorticoids were associated with an increased risk of severe COVID-19 outcomes compared with nonuse. These results emphasize the variety of circumstances of patients taking IIAs.

An international comparative analysis and roadmap to sustainable biosimilar markets.

Background: Although biosimilar uptake has increased (at a variable pace) in many countries, there have been recent concerns about the long-term sustainability of biosimilar markets. The aim of this manuscript is to assess the sustainability of policies across the biosimilar life cycle in selected countries with a view to propose recommendations for supporting biosimilar sustainability. Methods: The study conducted a comparative analysis across 17 countries from North America, South America, Asia-Pacific, Europe and the Gulf Cooperation Council. Biosimilar policies were identified and their sustainability was assessed based on country-specific reviews of the scientific and grey literature, validation by industry experts and 23 international and local non-industry experts, and two advisory board meetings with these non-industry experts. Results: Given that European countries tend to have more experience with biosimilars and more developed policy frameworks, they generally have higher sustainability scores than the other selected countries. Existing approaches to biosimilar manufacturing and R&D, policies guaranteeing safe and high-quality biosimilars, exemption from the requirement to apply health technology assessment to biosimilars, and initiatives counteracting biosimilar misconceptions are considered sustainable. However, biosimilar contracting approaches, biosimilar education and understanding can be ameliorated in all selected countries. Also, similar policies are sometimes perceived to be sustainable in some markets, but not in others. More generally, the sustainability of the biosimilar landscape depends on the nature of the healthcare system and existing pharmaceutical market access policies, the experience with biosimilar use and policies. This suggests that a general biosimilar policy toolkit that ensures sustainability does not exist, but varies from country to country. Conclusion: This study proposes a set of elements that should underpin sustainable biosimilar policy development over time in a country. At first, biosimilar policies should guarantee the safety and quality of biosimilars, healthy levels of supply and a level of cost savings. As a country gains experience with biosimilars, policies need to optimise uptake and combat any misconceptions about biosimilars. Finally, a country should implement biosimilar policies that foster competition, expand treatment options and ensure a sustainable market environment.

Patient-provider communication about medication cost in rheumatoid arthritis.

OBJECTIVE: To examine the perceived importance and frequency with which out-of-pocket medication costs are discussed between rheumatologists and patients with rheumatoid arthritis (RA) in Canada. METHODS: A cross-sectional online survey was distributed to patients with RA and rheumatologists; both were asked to rate their perceived importance of discussing medication costs, and how often these discussions occurred. Predictors of (1) patients discussing costs with their rheumatologist and (2) the perceived importance of discussing medication cost for patients were explored. RESULTS: Seventy-eight patients and 64 rheumatologists completed the survey; 68% patients and 75% of physicians rated the perceived importance of discussing medication costs as "quite" or "very important"; 22% of patients reported never talking about medication cost, but no physicians reported never discussing costs with patients. The only predictor of talking about cost among patients (at 10% level) was whether they perceived it as highly important (p = 0.058). Higher perceived importance of discussing out-of-pocket costs was associated with a more positive attitude to shared decision-making (p = 0.044). CONCLUSION: Discussions about cost do not always happen, even with diseases with potentially high medication costs like RA. Cost was more likely to be discussed by patients who perceived it as "very important," suggesting the onus might be on patients to initiate these conversations. Without any significant predictors regarding what may make physicians more likely to think it was important to discuss medication costs, there is a need to reinforce recommendations that all physicians seek to discuss costs with all of their patients when suggesting medications. Key Points • There is a need for patients and physicians to discuss costs in the treatment decision-making process. Our findings suggest this does not always happen. • Among patients, medication cost was more likely to be discussed by those who perceived it as "very important" and higher perceived importance of discussing out-of-pocket costs was associated with a more positive attitude to shared decision-making. • Our results did not reveal any significant predictors regarding what may make physicians more likely to think it was important to discuss medication costs, suggesting that there is a need to reinforce recommendations that all physicians seek to discuss medication costs with all of their patients when suggesting medications.

Preferences for treatments to prevent rheumatoid arthritis in Canada and the influence of shared decision-making.

OBJECTIVE: To elicit and compare preferences of patients and first-degree relatives and rheumatologists for preventive treatments for rheumatoid arthritis, understand the influence of shared decision-making, and predict the probability of uptake of the preventive treatments currently being studied. METHODS: An online discrete choice experiment was completed by patients and their first-degree relatives and rheumatologists. Results were analysed using mixed logit model to estimate preferences for the key features of treatments. Preferences for features of treatments were used to predict the probability of uptake of seven preventive treatment options. RESULTS: A total of 108 potential recipients (78 patients and 30 of their first-degree relatives) and 39 rheumatologists completed the survey. Preferences of patients/first-degree relatives and rheumatologists were similar (shared decision-making was most important, followed by the risk of side effects and potential benefit), but subtle differences existed; rheumatologists placed greater importance on certainty in evidence than patients/first-degree relatives, who felt that how a treatment was taken was more important. Predicted uptake suggested that 38% (95% CI 19%, 58%) of patients/first-degree relatives would not take a preventive treatment, compared with 12% (95% CI - 4%, 27%) of rheumatologists. A consistent finding across all groups was a preference for non-biologic disease-modifying anti-rheumatic drugs. CONCLUSION: Only relatively safe options for preventive treatment are likely to be acceptable to at-risk populations. This study of preventive treatments highlights that the preferences of physicians and recipients of treatment should take a central role in the design of clinical studies as well as in decisions to initiate treatments. Key Points • This paper is the first to compare preferences for preventive treatments between rheumatologists and patients and at-risk individuals. • The results of this study indicate that patients and at-risk individuals, as well as rheumatologists, are likely to prefer the safest options as preventive treatment, even if the potential benefit of these is lower. • Although preferences of patients and at-risk individuals are similar to those of rheumatologists, the choice of preventive treatment may differ between groups; this is important as shared decision-making was a critical factor in treatment decision-making. • Preferences of physicians and recipients of treatment should take a central role in the design of clinical studies as well as in decisions to initiate treatments.

Efficacy of a Physical Activity Counseling Program With Use of a Wearable Tracker in People With Inflammatory Arthritis: A Randomized Controlled Trial.

OBJECTIVE: To assess the efficacy of a multifaceted counseling intervention at improving physical activity participation and patient outcomes. METHODS: We recruited people with rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE). In weeks 1-8, the immediate group received education and counseling by a physical therapist, used a Fitbit and a web application to obtain feedback about their physical activity, and received 4 follow-up calls from the physical therapist. The delay group received the same intervention in weeks 10-17. Participants were assessed at baseline and at weeks 9, 18, and 27. The primary outcome was time spent in moderate/vigorous physical activity (MVPA; in bouts of ≥10 minutes) measured with a SenseWear device. Secondary outcomes included step count, time in sedentary behavior, pain, fatigue, mood, self-management capacity, and habitual behaviors. RESULTS: A total of 118 participants enrolled. The adjusted mean difference in MVPA was 9.4 minutes/day (95% confidence interval [95% CI] -0.5, 19.3, P = 0.06). A significant effect was found in pain (-2.45 [95% CI -4.78, -0.13], P = 0.04), and perceived walking habit (0.54 [95% CI 0.08, 0.99], P = 0.02). The remaining secondary outcomes improved, but were not statistically significant. Post hoc analysis revealed a significant effect in MVPA (14.3 minutes/day [95% CI 2.3, 26.3]) and pain (-4.05 [95% CI -6.73, -1.36]) in participants with RA, but not in those with SLE. CONCLUSION: Counseling by a physical therapist has the potential to improve physical activity in people with inflammatory arthritis, but further study is needed to understand the intervention effect on different diseases. We found a significant improvement in pain, suggesting that the intervention might have a positive effect on symptom management.

Effects of a 12-Week Multifaceted Wearable-Based Program for People With Knee Osteoarthritis: Randomized Controlled Trial.

BACKGROUND: Current guidelines emphasize an active lifestyle in the management of knee osteoarthritis (OA), but up to 90% of patients with OA are inactive. In a previous study, we demonstrated that an 8-week physiotherapist (PT)-led counseling intervention, with the use of a Fitbit, improved step count and quality of life in patients with knee OA, compared with a control. OBJECTIVE: This study aimed to examine the effect of a 12-week, multifaceted wearable-based program on physical activity and patient outcomes in patients with knee OA. METHODS: This was a randomized controlled trial with a delay-control design. The immediate group (IG) received group education, a Fitbit, access to FitViz (a Fitbit-compatible app), and 4 biweekly phone calls from a PT over 8 weeks. Participants then continued using Fitbit and FitViz independently up to week 12. The delay group (DG) received a monthly electronic newsletter in weeks 1 to 12 and started the same intervention in week 14. Participants were assessed in weeks 13, 26, and 39. The primary outcome was time spent in daily moderate-to-vigorous physical activity (MVPA; in bouts ≥10 min) measured with a SenseWear Mini. Secondary outcomes included daily steps, time spent in purposeful activity and sedentary behavior, Knee Injury and OA Outcome Score, Patient Health Questionnaire-9, Partners in Health Scale, Theory of Planned Behavior Questionnaire, and Self-Reported Habit Index. RESULTS: We enrolled 51 participants (IG: n=26 and DG: n=25). Compared with the IG, the DG accumulated significantly more MVPA time at baseline. The adjusted mean difference in MVPA was 13.1 min per day (95% CI 1.6 to 24.5). A significant effect was also found in the adjusted mean difference in perceived sitting habit at work (0.7; 95% CI 0.2 to 1.2) and during leisure activities (0.7; 95% CI 0.2 to 1.2). No significant effect was found in the remaining secondary outcomes. CONCLUSIONS: A 12-week multifaceted program with the use of a wearable device, an app, and PT counseling improved physical activity in people with knee OA. TRIAL REGISTRATION: ClinicalTrials.gov NCT02585323; https://clinicaltrials.gov/ct2/show/NCT02585323.

Canadians' views on the use of routinely collected data in health research: a patient-oriented cross-sectional survey.

BACKGROUND: Little is known about Canadians' knowledge of and level of support for using administrative and other large, routinely collected data for health research, despite the benefits of this type of research to patients, health care systems and society. We sought to benchmark the views of Canadian adults on this topic. METHODS: Researchers and patient leaders of 3 joint and skin disease organizations codeveloped a cross-sectional online survey that was conducted between January and August 2017. The patient partners were engaged as full partners. Recruitment was mainly through the organizations' websites, email and social media. The survey captured respondents' initial perceptions, then (after background information on the topic was provided) elicited their views on the benefits of health research using routinely collected data, data access/privacy concerns, ongoing perceptions and educational needs. RESULTS: Of the 230 people who consented, 183 (79.6%) started the survey, and 151 (65.6%) completed the survey. Of the 151, 117 (77.5%) were women, 84 (55.6%) were British Columbians, 87 (57.6%) were university graduates, and 101 (66.9%) had a chronic disease. At the beginning of the survey, 119 respondents (78.8%) felt positively about the use of routinely collected data for health research. Respondents identified the ability to study long-term treatment effects and rare events (114 [75.5%]) and large numbers of people (110 [72.8%]) as key benefits. Deidentification of personal information was the top privacy measure (135 [89.4%]), and 101 respondents (66.9%) wanted to learn more about data stewards' granting access to data. On survey completion, more respondents (141 [93.4%]) felt positively about the use of routinely collected data, but only 87 (57.6%) were confident about data security and privacy. INTERPRETATION: Respondents generally supported the use of deidentified routinely collected data for health research. Although further investigation is needed with more representative samples, our findings suggest that additional education, especially about access and privacy controls, may enhance public support for research endeavours using these data.

Preventing rheumatoid arthritis: Preferences for and predicted uptake of preventive treatments among high risk individuals.

OBJECTIVE: To understand preferences for and estimate the likely uptake of preventive treatments currently being evaluated in randomized controlled trials with individuals at increased risk of developing rheumatoid arthritis (RA). METHODS: Focus groups were used to identify key attributes of potential preventive treatment for RA (reduction in risk of RA, how treatment is taken, chance of side effects, certainty in estimates, health care providers opinion). A web-based discrete choice experiment (DCE) was administered to people at-risk of developing RA, asking them to first choose their preferred of two hypothetical preventive RA treatments, and then between their preferred treatment and 'no treatment for now.' DCE data was analyzed using conditional logit regression to estimate the significance and relative importance of attributes in influencing preferences. RESULTS: Two-hundred and eighty-eight first-degree relatives (60% female; 66% aged 18-39 years) completed all tasks in the survey. Fourteen out of fifteen attribute levels significantly influenced preferences for treatments. How treatment is taken (oral vs. infusion ß0.983, p<0.001), increasing reduction in risk of RA (ß0.922, p<0.001), health care professional preference (ß0.900, p<0.001), and avoiding irreversible (ß0.839, p<0.001) or reversible serious side effects (ß0.799, p<0.001) were most influential. Predicted uptake was high for non-biologic drugs (e.g. 84% hydroxycholoroquine), but very low for atorvastatin (8%) and biologics (<6%). CONCLUSION: Decisions to take preventative treatments are complex, and uptake depends on how treatments can compromise on convenience, potential risks and benefits, and recommendations/preferences of health care professionals. This evidence contributes to understanding whether different preventative treatment strategies are likely to be acceptable to target populations.

Patient education and self-management of musculoskeletal diseases.

The research literature reports that patient (consumer) education and self-management programs and practices help people with chronic disease live better lives by improving health outcomes and psycho-emotional and psychosocial measures. However, arthritis charities that offer self-management programs in the United Kingdom, the United States and Canada anecdotally report significant drops in enrollment, and emerging data suggest that these types of programs are not a panacea for people attending them. This chapter will provide the reader with the following: an introduction to patient education and self-management; a discussion on participation rates in patient education and arthritis self-management programs; an overview of the 'state-of-the-art' in patient education and self-management programs; new ideas on patient education delivery models; tips on improving physician-patient communication; and suggested areas of research required to advance the area of patient education and self-management.

Perspectives of patients, first-degree relatives and rheumatologists on preventive treatments for rheumatoid arthritis: a qualitative analysis.

BACKGROUND: There is growing evidence that it may be possible to identify people at high risk of developing rheumatoid arthritis (RA). Assuming that effective interventions were available, this could mean that treatments introduced in the pre-symptomatic phase could prevent or delay the onset of the disease. Our study aimed to identify the potential attributes involved in decision-making around whether or not to take preventive treatment for RA, in order to inform the development of a discrete choice experiment (DCE) to ascertain consumer preferences for a preventive treatment program for RA. METHODS: We conducted a focus group study to develop conceptual attributes, refine their meaning, and develop levels. Participants included RA patients, first-degree relatives of RA patients, and rheumatologists who were 18 years of age and over, could read and speak English, and could provide informed consent. Candidate attributes were refined through iterative rounds of data collection and analysis. All focus groups were audio-recorded and transcribed, and then analyzed using the Framework Method to identify, compare, and contrast key conceptual attributes. RESULTS: Attributes identified from analysis included: accuracy of the test, certainty in estimates, method of administration, risk of RA and risk of reduction with treatment, risk and seriousness of side effects, person recommending the test, and opinion of the health care professional. Patients with RA, first-degree relatives of patients, and rheumatologists all valued the accuracy of testing due to concerns about false positives, and valued certainty in estimates of the test and preventive treatment. Patients and first-degree relatives desired this evidence from a range of sources, including discussions with people with the disease and health care professionals, and their preferences were modified by the strength of recommendation from their health care professional. CONCLUSIONS: The role of the person who recommends a test and the opinion of a health care professional are novel potential attributes involved in decisions around whether or not to take preventive treatment for RA, that have not been included in previous DCEs.

Patient Perspectives on the Challenges and Responsibilities of Living With Chronic Inflammatory Diseases: Qualitative Study.

BACKGROUND: Collectively, chronic inflammatory diseases take a great toll on individuals and society in terms of participation restrictions, quality of life, and economic costs. Although prior qualitative studies have reported patients' experiences and challenges living with specific diseases, few have compared the consequences of disease management in daily life across different types of inflammatory diseases in studies led by patient partners. OBJECTIVE: The aim of this study was to identify the significant consequences of inflammatory arthritis, psoriasis, and inflammatory bowel diseases on daily life and explore commonalities across diseases. METHODS: A cross-sectional Web-based survey was designed by patient research partners and distributed by patient awareness organizations via their social media channels and by sharing a link in a newspaper story. One open-ended item asked about burdens and responsibilities experienced in daily life. Informed by narrative traditions in qualitative health research, we applied a thematic content analysis to participants' written accounts in response to this item. This is an example of a study conceived, conducted, and interpreted with patients as research partners. RESULTS: A total of 636 Canadians, with a median age band of 55-64 years, submitted surveys, and 80% of the respondents were women. Moreover, 540 participants provided written substantive responses to the open-ended item. Overall, 4 main narratives were generated: (1) daily life disrupted; (2) socioeconomic vulnerabilities; (3) stresses around visible, invisible, and hiding disabilities; and (4) actions aimed at staying positive. Ways in which participants experienced social stigma, pain and fatigue, balancing responsibilities, and worries about the future appeared throughout all 4 narratives. CONCLUSIONS: People living with chronic inflammatory diseases affecting joints, skin, and the digestive tract report important gaps between health, social, and economic support systems that create barriers to finding the services they need to sustain their health. Regardless of diagnosis, they report similar experiences navigating the consequences of lifelong conditions, which have implications for policy makers. There is a need for outcome measures in research and service delivery to address patient priorities and for programs to fill gaps created by the artificial administrative separation of health services, social services, and income assistance.

Effects of a Web-Based Patient Decision Aid on Biologic and Small-Molecule Agents for Rheumatoid Arthritis: Results From a Proof-of-Concept Study.

OBJECTIVE: To assess the extent to which ANSWER-2, an interactive online patient decision aid, reduces patients' decisional conflict and improves their medication-related knowledge and self-management capacity. METHODS: We used a pre-post study design. Eligible participants had a diagnosis of rheumatoid arthritis (RA), had been recommended to start using a biologic agent or small-molecule agent or to switch to a new one, and had internet access. Access to ANSWER-2 was provided immediately after enrollment. Outcome measures included 1) the Decisional Conflict Scale (DCS), 2) the Medication Education Impact Questionnaire (MeiQ), and 3) the Partners in Health Scale (PIHS). A paired t-test was used to assess differences pre- and postintervention. RESULTS: The majority of the 50 participants were women (n = 40), and the mean ± SD age of participants was 49.6 ± 12.2 years. The median disease duration was 5 years (25th, 75th percentile: 2, 10 years). The mean ± SD DCS score was 45.9 ± 25.1 preintervention and 25.1 ± 21.8 postintervention (mean change of -21.2 of 100 [95% confidence interval (95% CI) -28.1, -14.4], P < 0.001). Before using ANSWER-2, 20% of participants had a DCS score of <25, compared to 52% of participants after the intervention. Similar results were observed in the PIHS (mean ± SD 25.3 ± 14.8 preintervention and 20.4 ± 13.0 postintervention; mean change of -3.7 of 88 [95% CI -6.3, -1.0], P = 0.009). Findings from the MeiQ were mixed, with statistically significant differences found only in the self-management subscales. CONCLUSION: Patients' decisional conflict decreased and perceived self-management capacity improved after using ANSWER-2. Future research comparing the effectiveness of ANSWER-2 with that of educational material on biologic agents will provide further insight into its value in RA management.

People with arthritis and their families in rehabilitation, care and research.

PURPOSE OF REVIEW: People with arthritis play major roles in treatment and research. This review summarises the current knowledge on tools for enhancing shared-decision making in arthritis care; individual and family involvement in rehabilitation; and the consumer's role in arthritis research. RECENT FINDINGS: There are discrepancies in the use of appropriate arthritis treatment. To facilitate evidence-informed treatment choices, a number of decision aids have been developed. A recent systematic review concluded that decision aids could improve the shared-decision making process in a variety of diseases; but only one clinical trial was found on a musculoskeletal condition (back surgery). The evidence on family member participation in arthritis education programs is mixed, partly due to a lack of content specifically targeting family members in some studies. Finally, people with arthritis are playing important roles as collaborators in research. Early experience indicates a mutually beneficial relationship for both the individual and researchers. SUMMARY: This review offers three recommendations: First, further clinical trials are needed to test the effectiveness of decision aids in arthritis management. Second, education programs involving strong social support training for family members may improve client outcomes. Third, we encourage further studies to examine the experiences and challenges of people living with arthritis when participating as research partners.