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BACKGROUND AND PURPOSE: Hyperbaric oxygen therapy (HBOT) has been reported to improve neurological function in the chronic phase of stroke in a single trial having significant limitations, including a lack of a sham control. METHODS: We conducted a single-center, parallel-group, randomized trial to determine the effectiveness of HBOT compared with a sham control in adults who were 6 to 36 months post-ischemic stroke. The treatment group received 40 sessions of HBOT at the Vancouver General Hospital Hyperbaric Unit. The control group received 40 sessions of sham treatment designed to replicate an HBOT experience. Due to recruitment challenges and timeline/feasibility tracking by the research team, the control arm was altered after 20 months to a waitlist in the hope of increasing participation. In the second phase, participants were randomized to receive HBOT immediately or following an eight-week observation period. The primary outcome was the post-treatment Stroke Impact Scale-16 (SIS-16). Secondary outcomes included the National Institute of Health Stroke Scale, Berg Balance Test, Digit Symbol Substitution Test, 5-Metre Walk Test, 6-Minute Walk Test, Grip Strength, Montreal Cognitive Assessment, Box/Block Test, and Center for Epidemiological Studies - Depression and Short Form-36. Based on detecting a clinically important between-group difference of 10 on the SIS-16 score, our target sample size was 68 participants per arm. Results: From January 5, 2016 to October 9, 2018, 34 participants were enrolled in the trial, 27 during the first phase and seven in the second phase. The study was stopped after 36 months, and prior to meeting the sample size target, due to low recruitment. At the end of treatment, the difference in the SIS-16 between groups was 5.5 (95% CI: 1.3 to 9.7, p = 0.01) in favor of the sham group. CONCLUSIONS: Our results exclude a clinically important benefit of HBOT on the primary outcome of the SIS-16. These findings do not support the use of HBOT in chronic stroke survivors.
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OBJECTIVES: This paper describes the evolution and impact of Patient Research Partners (PRPs) in shaping research within OMERACT and provides a framework to enhance their engagement. This session explored one component of a validated framework to evaluate meaningful patient engagement. It provides insights, identifies opportunities for improvement, and recommends using the Patient Engagement in Research (PEIR) Framework, PEIR Plan Guide (workbook), and PEIRS-22 (scale) to guide and measure PRPs' engagement. METHODS: Before the conference, the team held planning sessions and selected the Feel-Valued component of the PEIR Workbook for exploration. During OMERACT 2023, we discussed this topic using the PEIR Plan Guide in an interactive plenary session. RESULTS: The plenary session produced 72 items from 14 breakout tables addressing PEIR Framework themes. CONCLUSIONS: This paper highlights the role and evolution of PRPs in shaping research within OMERACT. It emphasizes enhancing and accurately measuring PRP engagement through the PEIR Framework, PEIR Plan Guide, and PEIRS-22. The insights and methodologies presented aim to fortify future PRP engagement, ensuring it aligns with OMERACT's principles of patient-centred research.
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Participação do Paciente , Humanos , Participação do Paciente/métodos , Pesquisa Biomédica/métodosRESUMO
OBJECTIVE: Assess the efficacy of an 8-week virtual, physiotherapist (PT)-guided knee health program (Stop OsteoARthritis (SOAR)) to improve knee extensor strength in individuals at risk of post-traumatic knee osteoarthritis (PTOA). METHOD: In this superiority, randomized delayed-control trial, persons aged 16-35 years, 1-4 years after a self-reported knee joint injury were randomly assigned (1:1) to receive the SOAR program immediately (experimental group) or after a 9-week delay (control group). SOAR includes 1) one-time Knee Camp (virtual PT-guided group education, knee assessment, 1:1 exercise and physical activity (PA) goal-setting); 2) Weekly personalized home-based exercise and PA program with tracking; 3) Weekly 1:1 PT counseling (virtual). The primary outcome was a change in isokinetic knee extensor strength (baseline to 9-weeks). Additional outcomes included change in self-reported knee-related quality-of-life (QOL), self-efficacy, self-management and kinesiophobia, and PA (accelerometer) at 9 and 18-weeks. Linear regression models estimated the effect of the 8-week intervention at the primary endpoint (9-week). RESULTS: 49 of 54 randomized participants completed the study (91%). Participants were a mean ± standard deviation age of 27 ± 5.0 years, and 2.4 ± 0.9 years post-injury. No mean between group differences for the primary (0.05; 95% confidence interval (CI): -0.10, 0.19) or other outcomes were seen at 9 weeks except for greater improvements in perceived self-management (Partner in Health Scale; 11.3/96, 95%CI: 5.5, 17.1) and kinesiophobia (Tampa Scale of Kinesiophobia; -4.4/33, 95%CI: -7.0, -1.8). CONCLUSION: For active persons with elevated risk of PTOA, an 8-week SOAR program did not change knee-related strength, QOL, self-efficacy, or PA, on average, but may benefit the ability to self-manage knee health and kinesiophobia.
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Terapia por Exercício , Traumatismos do Joelho , Osteoartrite do Joelho , Humanos , Osteoartrite do Joelho/etiologia , Masculino , Feminino , Adulto , Adolescente , Adulto Jovem , Terapia por Exercício/métodos , Traumatismos do Joelho/complicações , Qualidade de Vida , Força Muscular , Resultado do Tratamento , AutoeficáciaRESUMO
OBJECTIVES: To identify barriers, facilitators, and strategies for future implementation of the OMERACT-Adherence Core Outcome Set (COS) in medication adherence trials for rheumatic conditions. METHODS: Preliminary Delphi survey findings were discussed at OMERACT 2023, utilising the Consolidated Framework for Implementation Research 2 to identify implementation barriers, facilitators, and solutions. RESULTS: Implementation strategies included simplifying the COS definitions, making it adaptabile for clinical practice and drug trials, adherence trial training workshops, and collaborating with key stakeholders such as payers and other COS developers. CONCLUSION: Ongoing collaboration with individuals and organisations within and beyond rheumatology ensures broader applicability of OMERACT-Adherence COS.
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Antirreumáticos , Adesão à Medicação , Doenças Reumáticas , Reumatologia , Humanos , Doenças Reumáticas/tratamento farmacológico , Antirreumáticos/uso terapêutico , Técnica Delphi , Ensaios Clínicos como Assunto , Avaliação de Resultados em Cuidados de SaúdeRESUMO
OBJECTIVE: To conduct an environmental scan and appraisal of online patient resources to support rheumatoid arthritis (RA) flare self-management. METHODS: We used the Google search engine (last search March 2023) using the terms "rheumatoid arthritis" and "flare management." Additional searches targeted major arthritis organizations, as well as regional, national, and international resources. Appraisal of the resources was conducted by 2 research team members and 1 patient partner to assess the understandability and actionability of the resource using the Patient Education Materials Assessment Tool (PEMAT). Resources rating ≥ 60% in both domains by either the research team or the patient partner were further considered for content review. During content review, resources were excluded if they contained product advertisements, inaccurate information, or use of noninclusive language. If content review criteria were met, resources were designated as "highly recommended" if both patient partners and researchers' PEMAT ratings were ≥ 60%. If PEMAT ratings were divergent and had a rating ≥ 60% from only 1 group of reviewers, the resource was designated "acceptable." RESULTS: We identified 44 resources; 12 were excluded as they did not pass the PEMAT assessment. Fourteen resources received ratings ≥ 60% on understandability and actionability from both researchers and patient partners; 10 of these were retained following content review as "highly recommended" flare resources. Of the 18 divergent PEMAT ratings, 8 resources were retained as "acceptable" following content review. CONCLUSION: There is high variability in the actionability and understandability of online RA flare materials; only 23% of resources were highly recommended by researchers and patient partners.
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Artrite Reumatoide , Educação de Pacientes como Assunto , Exacerbação dos Sintomas , Artrite Reumatoide/terapia , Humanos , Educação de Pacientes como Assunto/métodos , Internet , Autogestão/métodosRESUMO
Introduction: Prescribing strength training (ST) for people with rheumatoid arthritis (RA) is complicated by factors (barriers and facilitators) that affect participation. It is unclear whether guidelines include recommendations beyond prescription parameters (frequency, intensity, time, type, volume, and progression) and adequately incorporate participation factors tailored to people with RA. Objective: To summarize available recommendations to aid in the tailoring of ST prescriptions for people with RA. Methods: Medline, Embase, and CINAHL databases and gray literature were searched for guidelines, recommendations, and review articles containing ST prescription recommendations for RA. Article screening and data extraction were performed in duplicate by two reviewers. Results: Twenty-seven articles met the inclusion criteria. The recommendations address RA-specific ST participation factors including: knowledge gaps (of equipment, ST benefits, disease), memory problems, the management of joint deformity, comorbidity, the fluctuating nature of the disease and symptoms (pain, stiffness, flares), fear avoidance, motivation, need for referral to other professionals, and provision of RA-specific resources. Conclusion: This review summarizes recommendations for tailoring ST prescriptions for people with RA. Future research is required to understand how pain, symptom assessment, and unaddressed ST participation factors like sleep and medication side effects can be addressed to support ST participation amongst people with RA.
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BACKGROUND: Care complexity can occur when patients experience health challenges simultaneously with social barriers including food and/or housing insecurity, lack of transportation or other factors that impact care and patient outcomes. People with rheumatoid arthritis (RA) may experience care complexity due to the chronicity of their condition and other biopsychosocial factors. There are few standardised instruments that measure care complexity and none that measure care complexity specifically in people with RA. OBJECTIVES: We assessed the content validity of the INTERMEDS Self-Assessment (IMSA) instrument that measures care complexity with a sample of adults with RA and rheumatology healthcare providers (HCPs). Cognitive debriefing interviews utilising a reparative framework were conducted. METHODS: Patient participants were recruited through two existing studies where participants agreed to be contacted about future studies. Study information was also shared through email blasts, posters and brochures at rheumatology clinic sites and trusted arthritis websites. Various rheumatology HCPs were recruited through email blasts, and divisional emails and announcements. Interviews were conducted with nine patients living with RA and five rheumatology HCPs. RESULTS: Three main reparative themes were identified: (1) Lack of item clarity and standardisation including problems with item phrasing, inconsistency of the items and/or answer sets and noninclusive language; (2) item barrelling, where items asked about more than one issue, but only allowed a single answer choice; and (3) timeframes presented in the item or answer choices were either too long or too short, and did not fit the lived experiences of patients. Items predicting future healthcare needs were difficult to answer due to the episodic and fluctuating nature of RA. CONCLUSIONS: Despite international use of the IMSA to measure care complexity, patients with RA and rheumatology HCPs in our setting perceived that it did not have content validity for use in RA and that revision for use in this population under a reparative framework was unfeasible. Future instrument development requires an iterative cognitive debriefing and repair process with the population of interest in the early stages to ensure content validity and comprehension. PATIENT OR PUBLIC CONTRIBUTION: Patient and public contributions included both patient partners on the study team and people with RA who participated in the study. Patient partners were involved in study design, analysis and interpretation of the findings and manuscript preparation. Data analysis was structured according to emergent themes of the data that were grounded in patient perspectives and experiences.
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Artrite Reumatoide , Reumatologia , Adulto , Humanos , Autoavaliação (Psicologia) , Pessoal de Saúde , Artrite Reumatoide/psicologiaRESUMO
OBJECTIVE: Patients with rheumatoid arthritis (RA) may need to access rheumatology care between scheduled visits. WelTel is a virtual care platform that supports secure two-way text-messaging between patients and their health care team. The objective of the present study was to explore perspectives and experiences of health care providers (HCPs) and patients related to the use of WelTel as an adjunct to routine care. METHODS: Seventy patients with RA were enrolled in a six-month WelTel pilot project launched in September 2021. Patients received monthly "How are you?" text message check-ins and could message their health care team during clinic hours to request health advice. The current project is a qualitative study of the WelTel pilot. A subgroup of pilot participants was purposively sampled and invited to participate in interviews. A thematic analysis of transcripts was conducted using a deductive approach leveraging quality of care domains. RESULTS: Thirteen patients (62% female, mean age 62 years, 10 White) completed interviews. Patients' views suggested that text messaging with the rheumatology team supported high-quality care across multiple quality domains including patient-centeredness, timeliness, efficiency, safety, effectiveness, equity, and appropriateness. Seven HCPs (57.1% female, one pharmacist and six rheumatologists) completed interviews. HCPs' perspectives varied based on their experience with the WelTel platform. Additional themes reported by HCPs included perceived increased workload and burnout. CONCLUSIONS: Patients with RA perceived text-based messaging as supporting high-quality care. The impact of increased communications on HCP burnout and workload requires consideration, and future studies should evaluate the effect of texting on patient outcomes.
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OBJECTIVE: Patient-initiated follow-up (PIFU) for rheumatoid arthritis (RA) is a model of care delivery wherein patients contact the clinic when needed instead of having regularly scheduled follow-up. Our objective was to investigate the influence of different patient eligibility characteristics on the number of potentially deferred visits to inform future implementation of a PIFU strategy. METHODS: We conducted a retrospective chart review of 7 rheumatologists' practices at 2 university-based clinics between March 1, 2021, and February 28, 2022. Data extracted included the type and frequency of visits, disease management, comorbidities, and care complexities. Stable disease was defined as remission or low disease activity with no medication changes at all visits. The influence of patient characteristics on the number of deferrable visits in patients with stable disease was explored in 4 criteria sets that were based on early disease duration, medication prescribed, presence of care complexity elements, and comorbidity burden. RESULTS: Records from 770 visits were reviewed from 365 patients with RA (71.5% female, 70% seropositive). Among all criteria sets, the proportion of visits that could be redirected varied between 2.5% and 20.9%. The highest proportion of deferrable visits was achieved when eligibility criteria included only stable disease activity and patients with RA on conventional synthetic disease-modifying antirheumatic drugs or no medications (n = 161, 20.9%). CONCLUSION: PIFU may result in a more efficient use of specialist healthcare resources. However, the applicability of such models of care and the number of deferred visits is highly dependent on patient characteristics used to establish eligibility criteria for that model. These findings should be considered when planning implementation trials.
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Artrite Reumatoide , Reumatologistas , Humanos , Feminino , Masculino , Artrite Reumatoide/tratamento farmacológico , Artrite Reumatoide/terapia , Estudos Retrospectivos , Pessoa de Meia-Idade , Idoso , Adulto , Antirreumáticos/uso terapêutico , Visita a Consultório Médico/estatística & dados numéricos , Seguimentos , Reumatologia , Gerenciamento Clínico , Definição da ElegibilidadeRESUMO
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.
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Artrite Reumatoide , COVID-19 , Feminino , Humanos , Artrite Reumatoide/diagnóstico , Artrite Reumatoide/terapia , Artrite Reumatoide/psicologia , Colúmbia Britânica , COVID-19/prevenção & controle , Pandemias , Saúde Pública , Autocuidado , Masculino , Adulto , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
OBJECTIVES: Incorporating the perspectives of patients and public into the conduct of research has the potential to make scientific research more democratic. This paper explores how being a patient partner on an arthritis patient advisory board shapes the patienthood of a person living with arthritis. METHODS: An analysis was undertaken of the narratives of 22 patient research partners interviewed about their experiences on the Arthritis Patient Advisory Board (APAB), based in Vancouver, Canada. RESULTS: Participants' motivations to become involved in APAB stemmed largely from their desire to change their relationship with their condition. APAB was a living collective project in which participants invested their hope, both for their own lives as patients and for others with the disease. CONCLUSIONS: Our findings highlight how the journeys of patient partners connect and integrate seemingly disparate conceptions of what it means to be a patient. One's experience as a clinical 'patient' transforms into the broader notion of civic patienthood.
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Artrite , Humanos , Canadá , MotivaçãoRESUMO
BACKGROUND: Major depressive disorder (MDD) is one of the world's leading causes of disability. Our purpose was to characterize the total costs of MDD and evaluate the degree to which the British Columbia provincial health system meets its objective to protect people from the financial impact of illness. METHODS: We performed a population-based cohort study of adults newly diagnosed with MDD between 2015 and 2020 and followed their health system costs over two years. The expenditure proportion of MDD-related, patient paid costs relative to non-subsistence income was estimated, incidences of financial hardship were identified and the slope index of inequality (SII) between the highest and lowest income groups compared across regions. RESULTS: There were 250,855 individuals diagnosed with MDD in British Columbia over the observation period. Costs to the health system totalled >$1.5 billion (2020 CDN), averaging $138/week for the first 12 weeks following a new diagnosis and $65/week to week 52 and $55/week for weeks 53-104 unless MDD was refractory to treatment ($125/week between week 12-52 and $101/week over weeks 53-104). The proportion of MDD-attributable costs not covered by the health system was 2-15x greater than costs covered by the health system, exceeding $700/week for patients with severe MDD or MDD that was refractory to treatment. Population members in lower-income groups and urban homeowners had disadvantages in the distribution of financial protection received by the health system (SII reached - 8.47 and 15.25, respectively); however, financial hardship and inequities were mitigated province-wide if MDD went into remission (SII - 0.07 to 0.6). CONCLUSIONS: MDD-attributable costs to health systems and patients are highest in the first 12 weeks after a new diagnosis. During this time, lower income groups and homeowners in urban areas run the risk of financial hardship.
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Transtorno Depressivo Maior , Adulto , Humanos , Transtorno Depressivo Maior/epidemiologia , Transtorno Depressivo Maior/terapia , Estudos de Coortes , Colúmbia Britânica/epidemiologia , Depressão , Gastos em Saúde , Custos de Cuidados de SaúdeRESUMO
OBJECTIVES: To assess a remote physiotherapist (PT) counselling intervention using self-monitoring tools for improving self-management ability, physical activity participation, and health outcomes in people with rheumatoid arthritis (RA). METHODS: Eligible participants were randomly assigned to receive group education, a Fitbit®, a self-monitoring app, and PT counselling phone calls (Immediate Group). The Delayed Group received a monthly e-newsletter until week 26, and then the intervention. The primary outcome was Patient Activation Measure (PAM-13). Participants were assessed at baseline, 27 weeks (the primary end point) and 53 weeks. Secondary outcomes included disease activity, pain, fatigue, depression, sitting/walking habits, daily physical activity time, and daily awake sedentary time. Generalized Linear Mixed-effect Models (GLMMs) were used to assess the effect of the intervention on the change of each outcome measure from the initiation to 27 weeks after the intervention. RESULTS: Analysis included 131 participants (91.6% women; 80.2% completed during the COVID-19 pandemic). The mean change of PAM-13 at 27 weeks was 4.6 (SD = 14.7) in the Immediate Group vs -1.6 (SD = 12.5) in the Delayed Group. The mean change in Delayed Group at 53 weeks (after the 26-week intervention) was 3.6 (SD = 14.6). Overall, the intervention improved PAM-13 at 27 weeks post-intervention from the GLMM analysis (adjusted coefficient: 5.3; 95% CI: 2.0, 8.7; p = <0.001). Favourable intervention effects were also found in disease activity, fatigue, depression, and self-reported walking habit. CONCLUSION: Remote counselling paired with self-monitoring tools improved self-management ability in people with RA. Findings of secondary outcomes indicate that the intervention had a positive effect on symptom management.
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BACKGROUND: Applying the knowledge gained through implementation science can support the uptake of research evidence into practice; however, those doing and supporting implementation (implementation practitioners) may face barriers to applying implementation science in their work. One strategy to enhance individuals' and teams' ability to apply implementation science in practice is through training and professional development opportunities (capacity-building initiatives). Although there is an increasing demand for and offerings of implementation practice capacity-building initiatives, there is no universal agreement on what content should be included. In this study we aimed to explore what capacity-building developers and deliverers identify as essential training content for teaching implementation practice. METHODS: We conducted a convergent mixed-methods study with participants who had developed and/or delivered a capacity-building initiative focused on teaching implementation practice. Participants completed an online questionnaire to provide details on their capacity-building initiatives; took part in an interview or focus group to explore their questionnaire responses in depth; and offered course materials for review. We analyzed a subset of data that focused on the capacity-building initiatives' content and curriculum. We used descriptive statistics for quantitative data and conventional content analysis for qualitative data, with the data sets merged during the analytic phase. We presented frequency counts for each category to highlight commonalities and differences across capacity-building initiatives. RESULTS: Thirty-three individuals representing 20 capacity-building initiatives participated. Study participants identified several core content areas included in their capacity-building initiatives: (1) taking a process approach to implementation; (2) identifying and applying implementation theories, models, frameworks, and approaches; (3) learning implementation steps and skills; (4) developing relational skills. In addition, study participants described offering applied and pragmatic content (e.g., tools and resources), and tailoring and evolving the capacity-building initiative content to address emerging trends in implementation science. Study participants highlighted some challenges learners face when acquiring and applying implementation practice knowledge and skills. CONCLUSIONS: This study synthesized what experienced capacity-building initiative developers and deliverers identify as essential content for teaching implementation practice. These findings can inform the development, refinement, and delivery of capacity-building initiatives, as well as future research directions, to enhance the translation of implementation science into practice.
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BACKGROUND: Pharmacogenomic testing to identify variations in genes that influence metabolism of antidepressant medications can enhance efficacy and reduce adverse effects of pharmacotherapy for major depressive disorder. We sought to establish the cost-effectiveness of implementing pharmacogenomic testing to guide prescription of antidepressants. METHODS: We developed a discrete-time microsimulation model of care pathways for major depressive disorder in British Columbia, Canada, to evaluate the effectiveness and cost-effectiveness of pharmacogenomic testing from the public payer's perspective over 20 years. The model included unique patient characteristics (e.g., metabolizer phenotypes) and used estimates derived from systematic reviews, analyses of administrative data (2015-2020) and expert judgment. We estimated incremental costs, life-years and quality-adjusted life-years (QALYs) for a representative cohort of patients with major depressive disorder in BC. RESULTS: Pharmacogenomic testing, if implemented in BC for adult patients with moderate-severe major depressive disorder, was predicted to save the health system $956 million ($4926 per patient) and bring health gains of 0.064 life-years and 0.381 QALYs per patient (12 436 life-years and 74 023 QALYs overall over 20 yr). These savings were mainly driven by slowing or avoiding the transition to refractory (treatment-resistant) depression. Pharmacogenomic-guided care was associated with 37% fewer patients with refractory depression over 20 years. Sensitivity analyses estimated that costs of pharmacogenomic testing would be offset within about 2 years of implementation. INTERPRETATION: Pharmacogenomic testing to guide antidepressant use was estimated to yield population health gains while substantially reducing health system costs. These findings suggest that pharmacogenomic testing offers health systems an opportunity for a major value-promoting investment.
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Transtorno Depressivo Maior , Adulto , Humanos , Transtorno Depressivo Maior/tratamento farmacológico , Transtorno Depressivo Maior/genética , Farmacogenética , Depressão , Análise Custo-Benefício , Antidepressivos/uso terapêutico , Anos de Vida Ajustados por Qualidade de Vida , Colúmbia BritânicaRESUMO
BACKGROUND: The concept of intersectionality proposes that demographic and social constructs intersect with larger social structures of oppression and privilege to shape experiences. While intersectionality is a widely accepted concept in feminist and gender studies, there has been little attempt to use this lens in implementation science. We aimed to supplement the Consolidated Framework for Implementation Research (CFIR), a commonly used framework in implementation science, to support the incorporation of intersectionality in implementation science projects by (1) integrating an intersectional lens to the CFIR; and (2) developing a tool for researchers to be used alongside the updated framework. METHODS: Using a nominal group technique, an interdisciplinary framework committee (n = 17) prioritized the CFIR as one of three implementation science models, theories, and frameworks to supplement with intersectionality considerations; the modification of the other two frameworks are described in other papers. The CFIR subgroup (n = 7) reviewed the five domains and 26 constructs in the CFIR and prioritized domains and constructs for supplementation with intersectional considerations. The subgroup then iteratively developed recommendations and prompts for incorporating an intersectional approach within the prioritized domains and constructs. We developed recommendations and prompts to help researchers consider how personal identities and power structures may affect the facilitators and inhibitors of behavior change and the implementation of subsequent interventions. RESULTS: We achieved consensus on how to apply an intersectional lens to CFIR after six rounds of meetings. The final intersectionality supplemented CFIR includes the five original domains, and 28 constructs; the outer systems and structures and the outer cultures constructs were added to the outer setting domain. Intersectionality prompts were added to 13 of the 28 constructs. CONCLUSION: Through an expert-consensus approach, we modified the CFIR to include intersectionality considerations and developed a tool with prompts to help implementation users apply an intersectional lens using the updated framework.
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Ciência da Implementação , Enquadramento Interseccional , HumanosRESUMO
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.
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OBJECTIVES: To demonstrate how the 22-item Patient Engagement in Research Scale (PEIRS-22) can be used to develop recommendations for improving the meaningfulness of patient engagement. STUDY DESIGN AND SETTING: PEIRS-22 previously captured quantitative evaluation data from 15 patient partners in a self-study of the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance. Guided by deliberative dialogue, the current study involved 3 steps: (1) In-depth analysis and interpretation of the PEIRS-22 data produced a lay evidence summary with identified areas for improvement of meaningful engagement; (2) A 3-hour virtual workshop with patient partners and researchers generated initial recommendations; and (3) In two successive post-workshop surveys, ratings by workshop invitees led to consensus on the recommendations. RESULTS: Twenty-five participants attended the workshops and dialogued on 8 areas for improvement identified from the PEIRS-22 data. Twenty-eight unique initial recommendations led to consensus on 14 key recommendations organized across 4 categories: setting expectations for all team members, building trust and ongoing communication, providing opportunities to enhance learning and to develop skills, and acknowledging contributions of patient partners. CONCLUSION: Using PEIRS-22 data within a deliberate dialogue elucidated 14 actionable recommendations to support ongoing improvement of patient engagement at SPOR Evidence Alliance, a pan-Canadian health research initiative.
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Pacientes , Humanos , Canadá , Inquéritos e Questionários , ConsensoRESUMO
OBJECTIVE: An emerging strategy to address access challenges to rheumatologists for patients with RA is shared care between primary and specialist care, with patient-initiated rheumatologist follow-up as needed. The objective of this scoping review was to explore studies implementing this model of care. METHODS: Four electronic databases were searched from 01/01/2000-31/03/2022 using three main concepts (RA, shared care, patient-initiated follow-up). English-language studies of any design were included if they described the implementation and/or outcomes of shared care model for RA with patient-initiated follow-up. Two authors reviewed and selected articles in duplicate and extracted data on study characteristics, care model implementation and outcomes according to a pre-specified protocol. RESULTS: Following duplicate removal, 1578 articles were screened for inclusion and 58 underwent full-text review. Sixteen articles were included, representing 10 unique studies. Five studies had qualitative outcomes and two were pre-implementation studies. Model implementation varied significantly between studies. Effectiveness data was available in 10 studies and demonstrated equivalent outcomes for the model of care (disease activity, radiographic damage, quality of life). Health system costs were equivalent or lower than usual care. While satisfaction with care was equivalent or improved in shared care models with patient-initiated follow-up, some concerns were expressed in qualitative evaluation around appropriate patient selection for such models, and information for health equity evaluation was not reported. CONCLUSIONS: While shared care models with patient-initiated follow-up may offer comparable outcomes for RA, further work is required to understand patient preferences, health equity considerations and longer-term outcomes for such models of care.