Lisa C. Johnson

Long-term safety of canakinumab in patients with systemic juvenile idiopathic arthritis: 5-year results from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry

Alis Burciu, Amita Bansal, Anne C. Dennos, Deepak Narayanswamy et autres

BACKGROUND: Systemic juvenile idiopathic arthritis (SJIA) is a severe form of juvenile idiopathic arthritis characterized by fever, rash, chronic arthritis, and systemic inflammation. The introduction of biologics has improved the treatment options for SJIA. Canakinumab selectively inhibits interleukin-1β and is approved for …

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Equity of continuous glucose monitoring in young people with type 1 diabetes: a systematic review

James Howard Dicks, L McCann, Abraham Tolley, Alice Macdonald Barrell et autres

Abstract Background Socioeconomic (SES) and ethnic inequalities in type 1 diabetes (T1D) outcomes are widespread. There is concern that unequal access to technologies, such as continuous glucose monitoring (CGM), may increase disparities. This systematic review summarises the evidence for inequalities in access …

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Implementation study of the CARRA Uveitis Consensus Treatment Plans: feasibility for clinical practice and applicability for research

Margaret H. Chang, Fatima A. Barbar-Smiley, Shoghik Akoghlanian, Joanne Drew et autres

BACKGROUND: Chronic anterior uveitis (CAU) carries a significant risk for eye complications and vision loss. The Childhood Arthritis and Rheumatology Research Alliance (CARRA) introduced consensus treatment plans (CTPs) to standardize treatment for CAU and facilitate future comparative effectiveness studies. Two CTPs were …

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234 Complexity, confidence, and shifting context: an in-depth exploration of vaccine confidence during the covid-19 pandemic

Catherine H. Saunders, Gabrielle Stevens, Clarissa W. Hsu, Lisa C. Johnson et autres

Long-term care workers (LTCW) served on the frontline of the COVID-19 pandemic, often without sufficient information or protection, to care for the most vulnerable members of society. ‘She’s already in a bag… I do not mind the work...it’s the losing of life...I …

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Engaging Long-Term Care Workers in Research: Recruitment Approaches and Participant Characteristics From a Randomized Controlled Trial to Improve COVID-19 Vaccine Confidence

Lisa C. Johnson, Gabrielle Stevens, Matthew A. Cantrell, Nancy R. Little et autres

OBJECTIVE: To describe and compare the recruitment methods employed in a randomized controlled trial targeting long-term care workers, and resulting participant baseline characteristics. DESIGN: We used a multifaceted recruitment process to enroll long-term care workers in our 3-arm randomized controlled trial comparing …

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The Costs of Implementing a Conversation Aid for Uterine Fibroids in Multiple Health Care Settings

Stephanie C. Acquilano, Rachel C Forcino, Danielle C. Schubbe, Jaclyn Engel et autres

BACKGROUND: Health care organizations considering adopting a conversation aid (CA), a type of patient decision aid innovation, need information about the costs of implementation. OBJECTIVES: The aims of this study were to: (1) calculate the costs of introducing a CA in a …

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Enhancing Care Partnerships Using a Rheumatology Dashboard: Bringing Together What Matters Most to Both Patients and Clinicians

Aricca D. Van Citters, Alysha J. Taxter, Stephanie D. Mathew, ERICA F. LAWSON et autres

OBJECTIVE: Dashboards can support person-centered care by helping people partner with their clinicians to coproduce care based on preferences, shared decision-making, and evidence-based treatments. We engaged caregivers of children with juvenile idiopathic arthritis (JIA), adults with rheumatoid arthritis (RA), and clinicians in …

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The CONFIDENT study protocol: a randomized controlled trial comparing two methods to increase long-term care worker confidence in the COVID-19 vaccines

Gabrielle Stevens, Lisa C. Johnson, Catherine H. Saunders, Peter N. Schmidt et autres

BACKGROUND: Clinical and real-world effectiveness data for the COVID-19 vaccines have shown that they are the best defense in preventing severe illness and death throughout the pandemic. However, in the US, some groups remain more hesitant than others about receiving COVID-19 vaccines. …

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Co-Development of a Web Application (COVID-19 Social Site) for Long-Term Care Workers (“Something for Us”): User-Centered Design and Participatory Research Study

Catherine H. Saunders, Ailyn Sierpe, Gabrielle Stevens, Glyn Jones Elwyn et autres

BACKGROUND: Improving confidence in and uptake of COVID-19 vaccines and boosters among long-term care workers (LTCWs) is a crucial public health goal, given their role in the care of elderly people and people at risk. While difficult to reach with workplace communication …

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"Something for us:" Co-development of a COVID-19 vaccine social media web app for long-term care workers (Preprint)

Catherine H. Saunders, Ailyn Sierpe, Gabrielle Stevens, Glyn Jones Elwyn et autres

BACKGROUND Improving confidence in and uptake of the COVID-19 vaccines and boosters among long-term care workers (LTCWs) is a crucial public health goal, given their role in the care of the elderly and people at risk. While difficult to reach with workplace …

Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic Disease: Human-Centered Design and Usability Testing

Alysha J. Taxter, Lisa C. Johnson, Doreen Tabussi, Yukiko Kimura et autres

BACKGROUND: The coproduction of care involves patients and families partnering with their clinicians and care teams, with the premise that each brings their own perspective, knowledge, and expertise, as well as their own values, goals, and preferences, to the partnership. Dashboards can …

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Translating research into practice—implementation recommendations for pediatric rheumatology; Proceedings of the childhood arthritis and rheumatology research alliance 2020 implementation science retreat

Cagri Yildirim‐Toruner, Rajdeep Pooni, Y. Ingrid Goh, Emily M. Becker‐Haimes et autres

The translation of research findings into clinical practice is challenging, especially fields like in pediatric rheumatology, where the evidence base is limited, there are few clinical trials, and the conditions are rare and heterogeneous. Implementation science methodologies have been shown to reduce …

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