Remission and low disease activity are associated with lower healthcare costs: results from the Systemic Lupus International Collaborating Clinics (SLICC) inception cohort.

OBJECTIVES: This study aims to determine the independent impact of definitions of remission/low disease activity (LDA) on direct/indirect costs (DCs, ICs) in a multicentre inception cohort. METHODS: Patients from 31 centres in 10 countries were enrolled within 15 months of diagnosis and assessed annually. Five mutually exclusive disease activity states (DAS) were defined as (1) remission off-treatment: clinical (c) SLEDAI-2K=0, without prednisone/immunosuppressants; (2) remission on-treatment: cSLEDAI-2K=0, prednisone ≤5 mg/day and/or maintenance immunosuppressants; (3) LDA-Toronto Cohort (TC): cSLEDAI-2K≤2, without prednisone/immunosuppressants; (4) modified lupus LDA state (mLLDAS): SLEDAI-2K≤4, no activity in major organs/systems, no new activity, prednisone ≤7.5 mg/day and/or maintenance immunosuppressants and (5) active: all remaining assessments.At each assessment, patients were stratified into the most stringent DAS fulfilled and the proportion of time in a DAS since cohort entry was determined. Annual DCs/ICs (2021 Canadian dollars) were based on healthcare use and lost workforce/non-workforce productivity over the preceding year.The association between the proportion of time in a DAS and annual DC/IC was examined through multivariable random-effects linear regressions. RESULTS: 1692 patients were followed a mean of 9.7 years; 49.0% of assessments were active. Remission/LDA (per 25% increase in time in a remission/LDA state vs active) were associated with lower annual DC/IC: remission off-treatment (DC -$C1372; IC -$C2507), remission on-treatment (DC -$C973; IC -$C2604,) LDA-TC (DC -$C1158) and mLLDAS (DC -$C1040). There were no cost differences between remission/LDA states. CONCLUSIONS: Our data suggest that systemic lupus erythematosus patients who achieve remission, both off and on-therapy, and reductions in disease activity incur lower costs than those experiencing persistent disease activity.

Canadian patient experiences of lupus nephritis: a qualitative analysis.

OBJECTIVE: Lupus nephritis (LN) is one of the most severe manifestations of SLE; however, we know little about the lived experience of LN. This research investigates patient experiences and perspectives of (1) LN diagnosis; (2) living with LN; and (3) LN healthcare and treatment. METHODS: Patients aged ≥18 years with biopsy-proven pure or mixed International Society of Nephrology/Renal Pathology Society class III, IV or V LN were purposefully recruited from a Canadian lupus cohort to participate in semistructured in-depth interviews. RESULTS: Thirty patients with LN completed the interviews. The mean (SD) age was 42.1 (16.4) years, and 86.7% were female. Participants described challenges seeking, receiving and adjusting to a LN diagnosis, and some reported that their diagnosis process took weeks to years. While 16 participants were provided resources by healthcare providers to help them through the process of diagnosis, the need for accessible LN-specific information at diagnosis was highlighted (n=18). Participants also described the unpredictability of living with LN, particularly related to impacts on physical and mental health, relationships, leisure activities, employment and education, and family planning. While most (n=26) participants reported a positive impression of their care, the side effects of LN medications and the need to increase patient and societal awareness/understanding of LN were highlighted in the context of healthcare and treatment. CONCLUSIONS: The unpredictability of living with LN, the heavy treatment burden and a lack of patient/societal awareness substantially affect the lived experience of LN. These findings will inform the development of LN-specific patient resources to increase understanding of LN and improve well-being for patients.

Health information use by patients with systemic lupus erythematosus (SLE) pre and during the COVID-19 pandemic.

OBJECTIVE: We conducted an international survey of patients with SLE to assess their access, preference and trust in various health information sources pre-COVID-19 and during the COVID-19 pandemic. METHODS: Patients with SLE were recruited from 18 observational cohorts, and patients self-reporting SLE were recruited through five advocacy organisations. Respondents completed an online survey from June 2020 to December 2021 regarding the sources of health information they accessed in the 12 months preceding (pre-11 March 2020) and during (post-11 March 2020) the pandemic. Multivariable logistic regressions assessed factors associated with accessing news and social media post-11 March 2020, and self-reporting negative impacts from health information accessed through these sources. RESULTS: Surveys were completed by 2111 respondents; 92.8% were female, 76.6% had postsecondary education, mean (SD) age was 48.8 (14.0) years. Lupus specialists and family physicians were the most preferred sources pre-11 March 2020 and post-11 March 2020, yet were accessed less frequently (specialists: 78.5% pre vs 70.2% post, difference -8.3%, 95% CI -10.2% to -6.5%; family physicians: 57.1% pre vs 50.0% post, difference -7.1%, 95% CI -9.2% to -5.0%), while news (53.2% pre vs 62.1% post, difference 8.9%, 95% CI 6.7% to 11.0%) and social media (38.2% pre vs 40.6% post, difference 2.4%, 95% CI 0.7% to 4.2%) were accessed more frequently post-11 March 2020 vs pre-11 March 2020. 17.2% of respondents reported negative impacts from information accessed through news/social media. Those outside Canada, older respondents or with postsecondary education were more likely to access news media. Those in Asia, Latin America or younger respondents were more likely to access social media. Those in Asia, older respondents, males or with postsecondary education in Canada, Asia or the USA were less likely to be negatively impacted. CONCLUSIONS: Physicians, the most preferred and trusted sources, were accessed less frequently, while news and social media, less trusted sources, were accessed more frequently post-11 March 2020 vs pre-11 March 2020. Increasing accessibility to physicians, in person and virtually, may help reduce the consequences of accessing misinformation/disinformation.

Economic burden of food allergy in Canada: Estimating costs and identifying determinants.

BACKGROUND: Limited data exist on the economic burden of food allergy (FA). OBJECTIVE: To assess FA-related direct (healthcare and out-of-pocket) and indirect (lost productivity) costs and their determinants in Canadian children and adults self-reporting FA. METHODS: FA-individuals self-reporting a convincing history or physician diagnosis were recruited through FA registries, an anaphylaxis registry, and advocacy associations, and electronically surveyed regarding FA-related healthcare use, out-of-pocket expenditures, and time lost from paid and unpaid labor. Direct and indirect costs (2020 Canadian dollars [CAD]) were stratified on severe reaction vs mild, moderate or no reaction, and children vs adults; multivariate regressions assessed the association between costs and sociodemographic and disease characteristics. RESULTS: Between May 2018 and July 2019, 2692 eligible individuals responded (2189 convincing history and 503 physician diagnosis only); 1020 experienced a severe reaction; 1752 were children. Per FA-individual, annual healthcare, out-of-pocket, and indirect costs were $1267, $2136, and $7950. Those with a severe reaction had higher healthcare and out-of-pocket costs than those with mild, moderate or no reaction. FA-children vs FA-adults had higher healthcare and out-of-pocket costs, and lower indirect costs. Multivariate results showed that lower age, a severe reaction ever, multiple FAs, and fair or poor general health were associated with higher healthcare and out-of-pocket costs. Higher age, lower household education and income, and fair or poor general health were associated with higher indirect costs. CONCLUSION: The economic burden of FA in Canada is substantial, particularly for those with a severe reaction ever, multiple FAs, and fair or poor general health. It is crucial that those most adversely affected are allocated appropriate resources to support disease management.

Cytokine autoantibodies in SARS-CoV-2 prepandemic and intrapandemic samples from an SLE cohort.

Cytokine autoantibodies, particularly those directed to type I interferon (T1IFN), have been reported to portend an increased risk of severe COVID-19. Since SLE is one of the conditions historically associated with T1IFN autoantibodies, we sought to determine the prevalence of cytokine autoantibodies in our local cohort of 173 patients with SLE prepandemic and intrapandemic, of which nine had confirmed exposure to SARS-CoV-2. Autoantibodies to 16 different cytokines, including T1IFN, were measured by an addressable laser bead immunoassay. None of the 9 patients with confirmed exposure to SARS-CoV-2 had autoantibodies to T1IFN and none had severe COVID-19 symptoms, necessitating hospitalisation. Hence, we could not confirm that TIIFN autoantibodies increase the risk for severe COVID-19. In addition, the cytokine autoantibody pattern did not differ between those with and without evidence of SARS-CoV-2 exposure.

The value of hackathons in integrated knowledge translation (iKT) research: Waterlupus.

BACKGROUND: Despite a growing movement toward a knowledge-user-driven research process, our understanding of the generation, implementation and evaluation of specific approaches in the integrated knowledge translation (iKT) toolbox that aim to engage health and healthcare knowledge users is limited. Health hackathons offer an innovative approach with potential to generate direct and indirect health-related outcomes benefitting participants, knowledge users and the broader population. In May 2019, our research team hosted Waterlupus, a health hackathon to improve the economic lives of individuals with systemic lupus erythematosus (SLE) in Canada. Waterlupus was held with a multi-stakeholder group of 50 participants that included advocacy organization representatives, policy-makers, researchers, physicians, individuals with lived experience and students. While the hackathon generated viable solutions with the potential to positively impact the lives of individuals with SLE, understanding how participants perceived the hackathon as an iKT tool is critical in the planning and implementation of future iKT research. METHODS: Semi-structured in-depth telephone interviews were conducted with Waterlupus participants (n = 13) between August and November 2019 to (1) explore participant experiences of the hackathon; (2) investigate participant-identified hackathon outcomes; and (3) elicit recommendations for future iKT research using health hackathons. RESULTS: Participants provided feedback on the format and organization of Waterlupus, and identified direct and indirect outcomes to knowledge users, students and researchers beyond the innovations generated at the event. While the majority (n = 11) had never participated in a hackathon prior to Waterlupus, all 13 stated they would participate in future hackathons. Positive outcomes identified include connecting with students and other SLE stakeholders, the formation of professional and support networks, increased awareness of SLE, as well as the innovations generated. Participant recommendations for future health hackathons include the addition of stakeholders from industry or technology, and the need for clear and designated roles for stakeholders to ensure efficient use of resources. CONCLUSIONS: This work contributes to a limited literature regarding the use of health hackathons for social innovation, and offers knowledge-user suggestions relevant to the implementation of future iKT events, and hackathons specifically.

Hacking systemic lupus erythematosus (SLE): outcomes of the Waterlupus hackathon. / Sensibiliser au lupus érythémateux disséminé (LED) : résultats du programmathon Waterlupus.

INTRODUCTION: There is a growing literature demonstrating the benefits of engaging knowledge-users throughout the research process. We engaged a multi-stakeholder team to undertake a hackathon as part of an integrated knowledge translation (iKT) process to develop nonpharmacological interventions to enhance the economic lives of people with systemic lupus erythematosus (SLE). The aims of this research were to (1) increase understanding of the economic challenges of living with SLE through stakeholder engagement at a research hackathon; (2) investigate possible interventions to improve the economic lives of individuals affected by SLE in Canada; and (3) document the outcomes of the Waterlupus hackathon. METHODS: Waterlupus was held at the University of Waterloo in May 2019, attended by lupus advocacy organization representatives, researchers, physicians, individuals with lived experience and students. We conducted participant observation with participants' understanding and consent; notes from the hackathon were qualitatively analyzed to document hackathon outcomes. RESULTS: At the conclusion of the 28-hour hackathon event, five teams pitched nonpharmacological interventions to address the economic challenges of living with SLE. The winning team's pitch focussed on increasing accessibility of affordable sun-protective clothing. Other Waterlupus outcomes include increased awareness of SLE among participants, and professional and informal networking opportunities. CONCLUSION: This paper contributes to a limited literature on health hackathons. The successful outcomes of Waterlupus emphasize the value of hackathons as an iKT tool. Research about how knowledge-users perceive hackathons is an important next step.

Understanding an Environmental Health Risk: Investigating Asthma Risk Perception in Ontario Youth Sport.

The environment, broadly defined, plays a significant role in shaping human health. Understanding how environmental health risks are perceived by different people, in different places, and at different times is critical to their management. Using a place-based conceptual framework, this research investigates asthma risk perception determinants and outcomes amongst organized team sport stakeholders in Ontario. Two online surveys (coaches, n = 94; parents of athletes diagnosed with allergic disease, n = 90) were conducted. Binary regression was used to investigate determinants of risk perception. Asthma ranked seventh of 17 health hazards by coaches (23% ranked as high) and parents (34%), and determinants of risk included trigger knowledge, risk exposure, propensity for risk, indicators of trust, and socioeconomic variables (e.g., gender). As policy-makers look to manage health risks in sport, considering the risk profiles of different stakeholders (e.g., coaches, parents of vulnerable athletes), as well as the characteristics of the places in which risk is experienced, is critical to improving environment and health management in organized youth team sports.

Investigating Youth Sport Coach Perspectives of an Asthma Education Module.

Physical activity can reduce symptoms and improve wellbeing in people who have asthma, and organized sport is one way for children and youth with asthma to engage in exercise. While asthmatic youth may experience a number of barriers to sport participation, healthy physical and social sport environments supported by coaches can help asthmatic youth athletes maintain long-term engagement in activity. This paper reports results of an assessment of an online coach education tool related to air quality, physical activity, and allergic disease (e.g., asthma). Focus groups with youth team sport coaches in southern Ontario (n = 12 participants) were conducted to explore how users experience the module and short- and medium-term outcomes of implementation. Although coaches perceive the module as relevant, it is considered less valuable in certain contexts (e.g., indoor environments) or when compared with other coach education (e.g., tactical). Although broad asthma management behaviours (e.g., athlete medical forms) were recognized, specific module-identified prevention and management techniques (e.g., the Air Quality Health Index) were less frequently described. Ensuring environment and health coach education emphasizes athlete performance while reducing risk is critical to promoting module application and providing safe and enjoyable youth team sport spaces.

Making the links: do we connect climate change with health? A qualitative case study from Canada.

BACKGROUND: Climate change has been described as the biggest global health threat of the 21st century. Typically framed as an environmental issue, some suggest this view has contributed to public ambivalence and hence a lack of public engagement. The lack of understanding of climate change as a significant environmental health risk on the part of the lay public represents a significant barrier to behaviour change. We therefore need to think about reframing the impact of climate change from an environmental to a health issue. This paper builds on calls for increased understanding of the public's views of human health risks associated with climate change, focusing on facilitators and barriers to behaviour change. METHODS: Semi-structured in-depth interviews (n = 22) with residents of the Golden Horseshoe region of Southern Ontario were conducted between August 2010 and January 2011. Topics included individual and community health, climate change, and facilitators and barriers to behaviour change. RESULTS: Few participants recognized the role of the environment in the context of either individual and community health. When asked about health concerns specific to their community, however, environmental issues were mentioned frequently. Health effects as possible impacts of global environmental change were mentioned by 77% of participants when prompted, but this link was not described in great detail or within the context of impacting their communities or themselves. Participants were willing to act in environmentally friendly ways, and possible incentives to undertake behaviour change such as decreasing cost were described. Health co-benefits were not identified as incentives to engaging in mitigative or adaptive behaviours. CONCLUSIONS: The results support recent calls for reframing the impact of climate change from an environmental to a public health issue in order to increase public engagement in adaptive and mitigative behaviour change. While previous research has touched on public awareness of the human health risks of climate change, we have further explored the attitude-action link through the examination of facilitators and barriers to behaviour change.