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Article
Open AccessProtocol for the development of a tool to map systemic sclerosis pain sources, patterns, and management experiences: a Scleroderma Patient-centered Intervention Network patient-researcher partnership
Systemic sclerosis (SSc) is a rare, complex autoimmune rheumatic disease with multiple factors that contribute to pain. People with SSc emphasize the effect pain has on their quality of life, but no studies ha...
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Article
Open AccessTranslation and linguistic validation of 24 PROMIS item banks into French
The Patient-Reported Outcome Measurement Information System (PROMIS®) was developed to provide reliable, valid, and normed item banks to measure health. The item banks provide standardized scores on a common m...
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Article
Moderators of Loneliness Trajectories in People with Systemic Sclerosis During the COVID-19 Pandemic: A SPIN COVID-19 Cohort Longitudinal Study
Many individuals with systemic sclerosis (SSc) are at heightened risk for COVID-19 related morbidity and isolation due to interstitial lung disease, frailty, and immunosuppressant use. Minimal research has exp...
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Article
“From Where I Stand”: using multiple anchors yields different benchmarks for meaningful improvement and worsening in the rheumatoid arthritis flare questionnaire (RA-FQ)
The Rheumatoid Arthritis Flare Questionnaire (RA-FQ) is a patient-reported measure of disease activity in RA. We estimated minimal and meaningful change from the perspective of RA patients, physicians, and usi...
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Article
Open AccessDevelopment and psychometric evaluation of the CanSmart questionnaire to measure chronic disease self-management tasks
Psychometrically sound measures of chronic disease self-management tasks are needed to improve identification of patient needs and to tailor self-management programs. This study aimed to develop and conduct a ...
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Article
The Application of Preference Elicitation Methods in Clinical Trial Design to Quantify Trade-Offs: A Sco** Review
Patients can express preferences for different treatment options in a healthcare context, and these can be measured with quantitative preference elicitation methods.
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Article
Open AccessThe impact of tofacitinib on fatigue, sleep, and health-related quality of life in patients with rheumatoid arthritis: a post hoc analysis of data from Phase 3 trials
Fatigue, a common symptom of rheumatoid arthritis (RA), is detrimental to health-related quality of life (HRQoL). We evaluated the impact of tofacitinib on fatigue, sleep, and HRQoL and explored associations b...
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Article
Open AccessRandomized feasibility trial of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program
The Scleroderma Patient-centered Intervention Network (SPIN) developed an online self-management program (SPIN-SELF) designed to improve disease-management self-efficacy in people with systemic sclerosis (SSc,...
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Article
Open AccessThe Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program: protocol for a two-arm parallel partially nested randomized controlled feasibility trial with progression to full-scale trial
Systemic sclerosis (scleroderma; SSc) is a rare autoimmune connective tissue disease. We completed an initial feasibility trial of an online self-administered version of the Scleroderma Patient-centered Interv...
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Article
Open AccessResearchers’ perspectives on methodological challenges and outcomes selection in interventional studies targeting medication adherence in rheumatic diseases: an OMERACT-adherence study
Research on adherence interventions in rheumatology is limited by methodological issues, particularly heterogeneous outcomes. We aimed to describe researchers’ experiences with conducting interventional studie...
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Article
Open AccessSelecting, implementing and evaluating patient-reported outcome measures for routine clinical use in cancer: the Cancer Care Ontario approach
The use of Patient-Reported Outcome Measures (PROMs) in routine clinical care can help ensure symptoms are identified, acknowledged and addressed. In 2007, the provincial cancer agency, Cancer Care Ontario, be...
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Article
Validation of the Patient-Reported Outcomes Measurement Information System (PROMIS)-57 and -29 item short forms among kidney transplant recipients
The Patient-Reported Outcomes Measurement Information System (PROMIS) aims to address the lack of generalizable and universal measure of patient-reported outcomes to assess health-related quality of life. It h...
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Article
Open AccessPROMIS Fatigue short forms are reliable and valid in adults with rheumatoid arthritis
Fatigue is prevalent and impactful in rheumatoid arthritis (RA). There is no standardized measure for its assessment nor data concerning the performance of PROMIS-Fatigue short forms (SFs) in people with RA. W...
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Article
Open AccessOutcome Measures in Rheumatology - Interventions for medication Adherence (OMERACT-Adherence) Core Domain Set for Trials of Interventions for Medication Adherence in Rheumatology: 5 Phase Study Protocol
Over the last 20 years, there have been marked improvements in the availability of effective medications for rheumatic conditions such as gout, osteoporosis and rheumatoid arthritis (RA), which have led to a r...
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Article
Using patient-reported outcomes and PROMIS in research and clinical applications: experiences from the PCORI pilot projects
The field of patient-centered outcomes research (PCOR) continues to develop. Patient-reported outcomes and, in particular the Patient-Reported Outcomes Measurement Information System (PROMIS) contribute comple...
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Article
High rates of obesity and greater associated disability among people with rheumatoid arthritis in Canada
Obesity in rheumatoid arthritis has been associated with increased risk of comorbidities, larger medical costs, decreased quality of life, higher disease activity, and reduced therapeutic responses. We assesse...
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Article
Emotional vitality in family caregivers: content validation of a theoretical framework
Emotional vitality may play an important role in determining whether informal caregivers are able to successfully adopt and persist in their roles. This study describes a content validation of a conceptual mod...
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Article
Open AccessThe case for an international patient-reported outcomes measurement information system (PROMIS®) initiative
Patient-reported outcomes (PROs) play an increasingly important role in clinical practice and research. Modern psychometric methods such as item response theory (IRT) enable the creation of item banks that sup...
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Article
Yoga in Rheumatic Diseases
Yoga is a popular activity which may be well suited to some individuals with specific rheumatic disorders. Regular yoga practice can increase muscle strength and endurance, proprioception, and balance, with em...
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Article
Open AccessEffect of a web-based chronic disease management system on asthma control and health-related quality of life: study protocol for a randomized controlled trial
Asthma is a prevalent and costly disease resulting in reduced quality of life for a large proportion of individuals. Effective patient self-management is critical for improving health outcomes. However, key as...
