Publications by authors named "Anne Lyddiatt"

44 Publications

Decision coaching for people making healthcare decisions.

Cochrane Database Syst Rev 2021 Nov 8;11:CD013385. Epub 2021 Nov 8.

School of Nursing, University of Ottawa, Ottawa, Canada.

Background: Decision coaching is non-directive support delivered by a healthcare provider to help patients prepare to actively participate in making a health decision. 'Healthcare providers' are considered to be all people who are engaged in actions whose primary intent is to protect and improve health (e.g. nurses, doctors, pharmacists, social workers, health support workers such as peer health workers). Little is known about the effectiveness of decision coaching.

Objectives: To determine the effects of decision coaching (I) for people facing healthcare decisions for themselves or a family member (P) compared to (C) usual care or evidence-based intervention only, on outcomes (O) related to preparation for decision making, decisional needs and potential adverse effects.

Search Methods: We searched the Cochrane Library (Wiley), Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE (Ovid), Embase (Ovid), PsycINFO (Ovid), CINAHL (Ebsco), Nursing and Allied Health Source (ProQuest), and Web of Science from database inception to June 2021.

Selection Criteria: We included randomised controlled trials (RCTs) where the intervention was provided to adults or children preparing to make a treatment or screening healthcare decision for themselves or a family member. Decision coaching was defined as: a) delivered individually by a healthcare provider who is trained or using a protocol; and b) providing non-directive support and preparing an adult or child to participate in a healthcare decision. Comparisons included usual care or an alternate intervention. There were no language restrictions.

Data Collection And Analysis: Two authors independently screened citations, assessed risk of bias, and extracted data on characteristics of the intervention(s) and outcomes. Any disagreements were resolved by discussion to reach consensus. We used the standardised mean difference (SMD) with 95% confidence intervals (CI) as the measures of treatment effect and, where possible, synthesised results using a random-effects model. If more than one study measured the same outcome using different tools, we used a random-effects model to calculate the standardised mean difference (SMD) and 95% CI. We presented outcomes in summary of findings tables and applied GRADE methods to rate the certainty of the evidence.

Main Results: Out of 12,984 citations screened, we included 28 studies of decision coaching interventions alone or in combination with evidence-based information, involving 5509 adult participants (aged 18 to 85 years; 64% female, 52% white, 33% African-American/Black; 68% post-secondary education). The studies evaluated decision coaching used for a range of healthcare decisions (e.g. treatment decisions for cancer, menopause, mental illness, advancing kidney disease; screening decisions for cancer, genetic testing). Four of the 28 studies included three comparator arms.  For decision coaching compared with usual care (n = 4 studies), we are uncertain if decision coaching compared with usual care improves any outcomes (i.e. preparation for decision making, decision self-confidence, knowledge, decision regret, anxiety) as the certainty of the evidence was very low.  For decision coaching compared with evidence-based information only (n = 4 studies), there is low certainty-evidence that participants exposed to decision coaching may have little or no change in knowledge (SMD -0.23, 95% CI: -0.50 to 0.04; 3 studies, 406 participants). There is low certainty-evidence that participants exposed to decision coaching may have little or no change in anxiety, compared with evidence-based information. We are uncertain if decision coaching compared with evidence-based information improves other outcomes (i.e. decision self-confidence, feeling uninformed) as the certainty of the evidence was very low. For decision coaching plus evidence-based information compared with usual care (n = 17 studies), there is low certainty-evidence that participants may have improved knowledge (SMD 9.3, 95% CI: 6.6 to 12.1; 5 studies, 1073 participants). We are uncertain if decision coaching plus evidence-based information compared with usual care improves other outcomes (i.e. preparation for decision making, decision self-confidence, feeling uninformed, unclear values, feeling unsupported, decision regret, anxiety) as the certainty of the evidence was very low. For decision coaching plus evidence-based information compared with evidence-based information only (n = 7 studies), we are uncertain if decision coaching plus evidence-based information compared with evidence-based information only improves any outcomes (i.e. feeling uninformed, unclear values, feeling unsupported, knowledge, anxiety) as the certainty of the evidence was very low.

Authors' Conclusions: Decision coaching may improve participants' knowledge when used with evidence-based information. Our findings do not indicate any significant adverse effects (e.g. decision regret, anxiety) with the use of decision coaching. It is not possible to establish strong conclusions for other outcomes. It is unclear if decision coaching always needs to be paired with evidence-informed information. Further research is needed to establish the effectiveness of decision coaching for a broader range of outcomes.
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http://dx.doi.org/10.1002/14651858.CD013385.pub2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8575556PMC
November 2021

Evaluation of Rheumatology Workforce Supply Changes in Ontario, Canada, from 2000 to 2030.

Healthc Policy 2021 02;16(3):119-134

Rheumatologist, Southlake Regional Health Centre, Newmarket, ON; Assistant Professor of Medicine, University of Toronto, Toronto, ON.

Rheumatology workforces are increasingly challenged by too few physicians in face of the growing burden of rheumatic and musculoskeletal diseases (RMDs). Rheumatology is one of the most frequent non-surgical specialty referrals and has the longest wait times for subspecialists. We used a population-based approach to describe changes in the rheumatology workforce, patient volumes and geographic variation in the supply of and access to rheumatologists, in Ontario, Canada, between 2000 and 2019, and projected changes in supply by 2030. Over time, we observed greater feminization of the workforce and increasing age of workforce members. We identified a large regional variation in rheumatology supply. Fewer new patients are seen annually, which likely contributes to increasing wait times and reduced access to care. Strategies and policies to raise the critical mass and improve regional distribution of supply to effectively provide rheumatology care and support the healthcare delivery of patients with RMDs are needed.
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http://dx.doi.org/10.12927/hcpol.2021.26428DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7957360PMC
February 2021

Patients and clinicians define symptom levels and meaningful change for PROMIS pain interference and fatigue in RA using bookmarking.

Rheumatology (Oxford) 2021 09;60(9):4306-4314

Division of Rheumatology, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.

Objectives: Using patient-reported outcomes to inform clinical decision-making depends on knowing how to interpret scores. Patient-Reported Outcome Measurement Information System® (PROMIS®) instruments are increasingly used in rheumatology research and care, but there is little information available to guide interpretation of scores. We sought to identify thresholds and meaningful change for PROMIS Pain Interference and Fatigue scores from the perspective of RA patients and clinicians.

Methods: We developed patient vignettes using the PROMIS item banks representing a continuum of Pain Interference and Fatigue levels. During a series of face-to-face 'bookmarking' sessions, patients and clinicians identified thresholds for mild, moderate and severe levels of symptoms and identified change deemed meaningful for making treatment decisions.

Results: In general, patients selected higher cut points to demarcate thresholds than clinicians. Patients and clinicians generally identified changes of 5-10 points as representing meaningful change. The thresholds and meaningful change scores of patients were grounded in their lived experiences having RA, approach to self-management, and the impacts on function, roles and social participation.

Conclusion: Results offer new information about how both patients and clinicians view RA symptoms and functional impacts. Results suggest that patients and providers may use different strategies to define and interpret RA symptoms, and select different thresholds when describing symptoms as mild, moderate or severe. The magnitude of symptom change selected by patients and clinicians as being clinically meaningful in interpreting treatment efficacy and loss of response may be greater than levels determined by external anchor and statistical methods.
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http://dx.doi.org/10.1093/rheumatology/keab014DOI Listing
September 2021

Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation.

Syst Rev 2020 02 1;9(1):21. Epub 2020 Feb 1.

Department of Family Medicine, McMaster University, Hamilton, Ontario, Canada.

Background: Stakeholder engagement has become widely accepted as a necessary component of guideline development and implementation. While frameworks for developing guidelines express the need for those potentially affected by guideline recommendations to be involved in their development, there is a lack of consensus on how this should be done in practice. Further, there is a lack of guidance on how to equitably and meaningfully engage multiple stakeholders. We aim to develop guidance for the meaningful and equitable engagement of multiple stakeholders in guideline development and implementation.

Methods: This will be a multi-stage project. The first stage is to conduct a series of four systematic reviews. These will (1) describe existing guidance and methods for stakeholder engagement in guideline development and implementation, (2) characterize barriers and facilitators to stakeholder engagement in guideline development and implementation, (3) explore the impact of stakeholder engagement on guideline development and implementation, and (4) identify issues related to conflicts of interest when engaging multiple stakeholders in guideline development and implementation.

Discussion: We will collaborate with our multiple and diverse stakeholders to develop guidance for multi-stakeholder engagement in guideline development and implementation. We will use the results of the systematic reviews to develop a candidate list of draft guidance recommendations and will seek broad feedback on the draft guidance via an online survey of guideline developers and external stakeholders. An invited group of representatives from all stakeholder groups will discuss the results of the survey at a consensus meeting which will inform the development of the final guidance papers. Our overall goal is to improve the development of guidelines through meaningful and equitable multi-stakeholder engagement, and subsequently to improve health outcomes and reduce inequities in health.
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http://dx.doi.org/10.1186/s13643-020-1272-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6995157PMC
February 2020

Interactions and perceptions of patients with rheumatoid arthritis participating in an online support group.

Clin Rheumatol 2020 Jun 31;39(6):1775-1782. Epub 2020 Jan 31.

Department of General Internal Medicine, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Unit 437, Houston, TX, 77030, USA.

Objective: Peer support is important for psychosocial well-being in patients with rheumatoid arthritis (RA). Our objective was to assess the interactions, engagement, and perceptions of participants in an online support group for patients with RA.

Methods: Participants were 18 years or older, diagnosed with RA within 10 years, and residing in the USA or Canada. All participated in a closed Facebook online support group. Membership was by invitation only, and discussions were visible only to members, moderators, and two research staff. Each week, participants discussed a topic posted by a moderator. They also shared other disease-relevant information beside the topics posted. We assessed participants' engagement and qualitatively analyzed the content of their postings in the first 5 weeks of participation.

Results: The group had 90 participants: 94% were female and 83% white. Median age was 54 (24-84) years. Mean number of contributors per week was 50 (range, 42-62); 10% of participants never contributed to the discussions. Participation in discussions declined over time. Over three-quarters of participant posting were about information sharing. Participants shared information on disease experiences, medications, social lives (including pictures of themselves, families, and pets), online resources on RA, frustrations, messages of encouragement, and satirical depictions of their disease experience. Many expressed gratitude for the social support provided.

Conclusion: Participants were generally enthusiastic and shared disease-related information and personal experiences. Social media groups may provide alternative means of providing education and peer support often lacking in traditional models of care.Key Points• The study examines how patients with rheumatoid arthritis engage in an online support group and the nature of their interactions.• This study reveals that social media platforms could provide viable options or complements to the traditional face-to-face small group patient support system.• It may be necessary to pay special attention to how to ensure a sustained participant interest in online social support group among patients with rheumatoid arthritis.
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http://dx.doi.org/10.1007/s10067-020-04967-yDOI Listing
June 2020

Self-management across chronic diseases: Targeting education and support needs.

Patient Educ Couns 2020 02 6;103(2):398-404. Epub 2019 Sep 6.

Patient partner, Patient Partners in Arthritis, 393 University Avenue, Suite 1700, Toronto, ON, M5G 1E6, Canada. Electronic address:

Objectives: Among Canadian adults with chronic disease: 1) to identify groups that differ in self-management task frequency and self-efficacy; 2) to compare group characteristics and preferences for self-management support.

Methods: Using data from an online survey, cluster analysis was used to identify groups that differed in self-management task frequency and self-efficacy. Multivariable regression was used to explore relationships with patient characteristics and preferences.

Results: Cluster analysis (n = 247) revealed three groups:Vulnerable Self-Managers (n = 55), with the highest task frequency and lowest self-efficacy; Confident Self-Managers (n = 73), with the lowest task frequency and highest self-efficacy; and Moderate Needs Self-Managers (n = 119), with intermediate task frequency and self-efficacy. Vulnerable Self-Managers, when compared with the Confident group, were more often: on illness-related employment disability or unemployed; less well educated; diagnosed with emotional problems or hypertension, and had greater multimorbidity. They participated less often in self-management programs, and differed in support preferences.

Conclusions: Knowing the characteristics of vulnerable self-managers can help in targeting those in greater need for self-management support that matches their preferences.

Practice Implications: Different approaches are needed to support self-management in the vulnerable population.
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http://dx.doi.org/10.1016/j.pec.2019.08.038DOI Listing
February 2020

Interventions for morphea.

Cochrane Database Syst Rev 2019 07 16;7:CD005027. Epub 2019 Jul 16.

Cochrane Brazil, Centro de Estudos de Saúde Baseada em Evidências e Avaliação Tecnológica em Saúde, Rua Borges Lagoa, 564 cj 63, São Paulo, São Paulo, Brazil, 04038-000.

Background: Morphea (morphoea) is an immune-mediated disease in which excess synthesis and deposition of collagen in the skin and underlying connective tissues results in hardened cutaneous areas. Morphea has different clinical features according to the subtype and stage of evolution of the disease. There is currently no consensus on optimal interventions for morphea.

Objectives: To assess the effects of treatments for people with any form of morphea.

Search Methods: We searched the following databases up to July 2018: the Cochrane Skin Specialised Register, CENTRAL, MEDLINE, Embase, LILACS, and five trial registers. We checked the reference lists of included studies for further references to relevant randomised controlled trials.

Selection Criteria: Randomised controlled trials of topical, intralesional, or systemic treatments (isolated or combined) in anyone who has been clinically diagnosed by a medical practitioner with any form of morphea. Eligible controls were placebo, no intervention, any other treatment, or different doses or duration of a treatment.

Data Collection And Analysis: We used standard methodological procedures expected by Cochrane. The primary outcomes were global improvement of disease activity or damage assessed by a medical practitioner or by participants, and adverse effects. Secondary outcomes were improvement of disease activity and improvement of disease damage. We used GRADE to assess the quality of the evidence for each outcome.

Main Results: We included 14 trials, with a total of 429 randomised participants, aged between 3 and 76 years. There were juvenile and adult participants; over half were female, and the majority had circumscribed morphea, followed by linear scleroderma. The settings of the studies (where described) included a dermatologic centre, a national laboratory centre, paediatric rheumatology and dermatology centres, and a university hospital or medical centre.The studies evaluated heterogenous therapies for different types of morphea, covering a wide range of comparisons. We were unable to conduct any meta-analyses. Seven studies investigated topical medications, two evaluated intralesional medications, and five investigated systemic medications. The study duration ranged from seven weeks to 15 months from baseline.We present here results for our primary outcomes for our four key comparisons. All of these results are based on low-quality evidence.The included studies were at high risk of performance, detection, attrition, and reporting bias.Global improvement of disease activity or damage after treatment may be higher with oral methotrexate (15 mg/m², maximum 20 mg, once a week, for 12 months or until disease flare) plus oral prednisone (1 mg/kg a day, maximum of 50 mg, in a single morning dose, for three months, and one month with gradually decreased dose until discontinuation) than with placebo plus oral prednisone in children and adolescents with active morphea (linear scleroderma, generalised morphea or mixed morphea: linear and circumscribed) (risk ratio (RR) 2.31, 95% confidence interval (CI) 1.20 to 4.45; number needed to treat for an additional beneficial outcome (NNTB) 3; 1 randomised controlled trial (RCT); 70 participants, all juvenile). This outcome was measured 12 months from the start of treatment or until flare of the disease. Data were not available separately for each morphea type. There may be little or no difference in the number of participants experiencing at least one adverse event with oral methotrexate (26/46) or placebo (11/24) (RR 1.23, 95% CI 0.75 to 2.04; 1 RCT; 70 participants assessed during the 12-month follow-up). Adverse events related to methotrexate included alopecia, nausea, headache, fatigue and hepatotoxicity, whilst adverse events related to prednisone (given in both groups) included weight gain (more than 5% of body weight) and striae rubrae.One three-armed RCT compared the following treatments: medium-dose (50 J/cm²) UVA-1; low-dose (20 J/cm²) UVA-1; and narrowband UVB phototherapy. There may be little or no difference between treatments in global improvement of disease activity or damage, as assessed through the modified skin score (where high values represent a worse outcome): medium-dose UVA-1 phototherapy versus low-dose UVA-1 group: MD 1.60, 95% CI -1.70 to 4.90 (44 participants); narrowband UVB phototherapy versus medium-dose UVA-1 group: MD -1.70, 95% CI -5.27 to 1.87 (35 participants); and narrowband UVB versus low-dose UVA-1 group: MD -0.10, 95% CI -2.49 to 2.29 (45 participants). This RCT included children and adults with active morphea (circumscribed morphea, linear scleroderma (with trunk/limb variant and head variant), generalised morphea, or mixed morphea), who received phototherapy five times a week, for eight weeks. Outcomes were measured at eight weeks from the start of treatment.Safety data, measured throughout treatment, from the same RCT (62 participants) showed that treatment with UVA-1 phototherapy may cause mild tanning compared to narrowband UVB: narrowband UVB versus medium-dose UVA-1: RR 0.03, 95% CI 0.00 to 0.42; 35 participants; narrowband UVB versus low-dose UVA-1: RR 0.03, 95% CI 0.00 to 0.41; 45 participants. However, there may be no difference in the number of participants reporting mild tanning when comparing medium and low dose UVA-1 phototherapy (RR 1.00, 95% CI 0.91 to 1.10; 44 participants). Transient erythema was reported in three participants with narrowband UVB and no participants in the low- or medium-dose UVA-1 groups.

Authors' Conclusions: Compared to placebo plus oral prednisone, oral methotrexate plus oral prednisone may improve disease activity or damage in juvenile active morphea (linear scleroderma, generalised morphea or mixed morphea: linear and circumscribed), but there may be a slightly increased chance of experiencing at least one adverse event.When medium-dose UVA-1 (50 J/cm²), low-dose UVA-1 (20 J/cm²), and narrowband UVB were compared against each other in treating children and adults with active morphea (circumscribed morphea, linear scleroderma, generalised morphea and mixed morphea), there may be little or no difference between these treatments on global improvement of disease activity or damage. UVA-1 phototherapy may cause more mild tanning than narrowband UVB, but there may be no difference between medium- and low-dose UVA-1 phototherapy. These results are based on low-quality evidence.Limitations of data and analyses include risk of bias and imprecision (small number of participants or events and wide confidence intervals). We encourage multicentre RCTs to increase sample size and evaluate, with validated tools, different treatment responses according to the subtypes of morphea and age groups.
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http://dx.doi.org/10.1002/14651858.CD005027.pub5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6630193PMC
July 2019

PROMIS Fatigue short forms are reliable and valid in adults with rheumatoid arthritis.

J Patient Rep Outcomes 2019 Feb 21;3(1):14. Epub 2019 Feb 21.

Johns Hopkins Medicine, Division of Rheumatology, Mason F Lord Tower, 5200 Eastern Avenue, Rm 4100, Baltimore, MD, 21224, USA.

Background: 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. We evaluated the construct validity of 4-, 7-, and 8-item PROMIS-Fatigue SFs in RA patients across the range of disease activity.

Methods: Adult RA patients were recruited from an online patient community and an observational cohort from three academic medical centers. Measures included PROMIS-Fatigue SFs, other PROMIS measures, and other patient reported outcomes including RAND-36 Vitality, Fatigue NRS, and patient global assessment of disease activity. Other measures from the observational cohort included 28-joint swollen and tender joints, physician global assessment, and the composite RA clinical disease activity index (CDAI).

Results: Two-hundred online participants and 348 participants from the observational cohort were included. PROMIS Fatigue SF scores spanned the measurement continuum and correlated highly with each other (r's ≥ 0.91) and other fatigue measures (r's ≥ 0.85). PROMIS-Fatigue SF scores were highly and inversely associated with Physical Function and Participation (r's - 0.77 to - 0.78), and moderately-highly and positively correlated with pain, sleep disturbance, anxiety, and depression (r's 0.60 to 0.75). PROMIS-Fatigue SF scores showed dose-response relationships across fatigue severity descriptors and CDAI categories.

Conclusions: These results provide robust evidence supporting the construct validity of the 4, 7, and 8-item PROMIS-Fatigue SFs. They capture fatigue across the spectrum of RA disease activity in diverse groups of individuals and should be considered for use as patient-centered assessments of disease control and treatment efficacy.
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http://dx.doi.org/10.1186/s41687-019-0105-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6384289PMC
February 2019

Patient Perspectives on DMARD Safety Concerns in Rheumatology Trials: Results from Inflammatory Arthritis Patient Focus Groups and OMERACT Attendees Discussion.

J Rheumatol 2019 09 15;46(9):1168-1172. Epub 2019 Feb 15.

From the Department of Family Medicine, and the Department of Medicine, McGill University, Montreal, Quebec; Ottawa Hospital Research Institute, Ottawa Hospital; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital, Copenhagen; Department of Rheumatology, Odense University Hospital, Odense, Denmark; Canberra Rheumatology; College of Health and Medicine, Australian National University, Canberra; Centre for Kidney Research, The Children's Hospital at Westmead; Institute of Bone and Joint Research-Kolling Institute, University of Sydney; Sydney Medical School, University of Sydney, Sydney; Department of Rheumatology, Royal North Shore Hospital; Institute of Bone and Joint Research, Kolling Institute, Northern Sydney Local Health District, St Leonards; Centre for Health Policy, School of Population and Global Health, The University of Melbourne, Melbourne; Northern Health, Epping, Australia; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland; Division of Rheumatology, Department of Medicine, Hospital for Special Surgery; Department of Social Work Programs, Hospital for Special Surgery, New York, New York; SDG LLC, Cambridge, Massachusetts, USA.

Objective: The Outcome Measures in Rheumatology (OMERACT) Safety Working Group is identifying core safety domains that matter most to patients with rheumatic disease.

Methods: International focus groups were held with 39 patients with inflammatory arthritis to identify disease-modifying antirheumatic drug (DMARD) experiences and concerns. Themes were identified by pragmatic thematic coding and discussed in small groups by meeting attendees.

Results: Patients view DMARD side effects as a continuum and consider the cumulative effect on day-to-day function. Disease and drug experiences, personal factors, and life circumstances influence tolerance of side effects and treatment persistence.

Conclusion: Patients weigh overall adverse effects and benefits over time in relation to experiences and life circumstances.
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http://dx.doi.org/10.3899/jrheum.181185DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6697626PMC
September 2019

OMERACT Development of a Core Domain Set of Outcomes for Shared Decision-making Interventions.

J Rheumatol 2019 10 1;46(10):1409-1414. Epub 2019 Feb 1.

From the Children's Hospital of Eastern Ontario Research Institute; Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa; School of Nursing, University of Ottawa; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Ottawa Hospital Research Institute, Centre for Practice-Changing Research; Clinical Epidemiology Program, Ottawa Hospital Research Institute; School of Rehabilitation Therapy, Queen's University, Kingston; Toronto Western Hospital, University Health Network; Institute for Work & Health; Institute of Health Policy, Management and Evaluation, University of Toronto; Involved Medicine, University of Toronto, Toronto, Ontario; Department of Physical Therapy, University of British Columbia; Arthritis Research Canada, Vancouver, British Columbia; Department of Family Medicine and Emergency Medicine, Université Laval, Quebec City; McGill University, Montreal, Quebec, Canada; Portland Health Care System; Oregon Health & Science University, Portland, Oregon; Department of Internal Medicine, Yale University, New Haven, Connecticut; The Ohio State University, Columbus; Division of Rheumatology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio; Department of General Internal Medicine, Section of Rheumatology and Clinical Immunology, University of Texas MD Anderson Cancer Center, Houston, Texas; University of Alabama at Birmingham, Birmingham, Alabama, USA; School of Population and Global Health, University of Melbourne; Centre for Health Communication and Participation, School of Psychology and Public Health, La Trobe University, Melbourne; Western Sydney University; Faculty of Medicine, University of Sydney; Department of Medicine, University of Sydney, Institute of Bone and Joint Research; Department of Rheumatology, Royal North Shore Hospital, Sydney; Canberra Rheumatology, Department of Rheumatology, Canberra Hospital; College of Health and Medicine, Australian National University, Canberra, Australia; Amsterdam University Medical Centre, Department of Medical Humanities, Amsterdam; Department of Psychology, Health and Technology, University of Twente, Enschede; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center; Caphri Research Institute, Maastricht University, Maastricht; Access to Medicine Foundation, Haarlem, the Netherlands; Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital, Copenhagen; Department of Rheumatology, Odense University Hospital, Odense, Denmark; Department of Internal Medicine II, Rheumatology Research Center, Rheumatology, Clinical Immunology, Osteology, Physical Therapy and Sports Medicine, Schlosspark-Klinik, Charité, University Medicine Berlin, Berlin, Germany; Rheumatology and Rehabilitation Ain Shams University, Cairo, Egypt; King's College London, London, UK.

Objective: The Outcome Measures in Rheumatology (OMERACT) Shared Decision Making (SDM) Working Group aims to determine the core outcome domain set for measuring the effectiveness of SDM interventions in rheumatology trials.

Methods: A white paper was developed to clarify the draft core domain set. It was then used to prepare for interviews to investigate reasons for lack of consensus on it and to suggest further improvements.

Results: OMERACT scientists/clinicians (n = 13) and patients (n = 10) suggested limiting the core domain set to outcome domains, removing process domains, and clarifying remaining domains.

Conclusion: A revised core domain set will undergo further consensus-building.
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http://dx.doi.org/10.3899/jrheum.181071DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6675671PMC
October 2019

Is quality of life a suitable measure of patient decision aid effectiveness? Sub-analysis of a Cochrane systematic review.

Qual Life Res 2019 Mar 13;28(3):593-607. Epub 2018 Nov 13.

School of Nursing, University of Ottawa, Ottawa, Canada.

Purpose: Patient decision-aids (PtDAs) help patients make informed treatment decisions incorporating their values. Health-related quality of life (HRQOL) is sometimes an outcome of PtDA effectiveness trials, but its suitability for this purpose is unclear. We sought to provide insights into this question by critically appraising how randomized controlled trials (RCTs) evaluating PtDA effectiveness measure and report HRQOL.

Methods: We conducted a sub-analysis of RCTs included in the 2017 Cochrane review of PtDAs. Trials assessing HRQOL at baseline and post-PtDA, and comparing PtDA with comparison groups were included. Two reviewers independently extracted data and assessed study quality. Analysis was descriptive.

Results: Of 105 RCTs, 11 were eligible for inclusion. Patients randomized to PtDAs did not report better HRQOL than those randomized to usual care. While all 11 RCTs adequately described baseline sample characteristics and reported HRQOL results for study groups, few stated a priori HRQOL expectations or hypotheses (36%); made a link between HRQOL and the decision (18%); provided a rationale or justification for HRQOL assessment (18%); provided reason for choice of HRQOL assessment time-points (9%); or adjusted p-values for multiple HRQOL domains and time-points (0%).

Discussion: PtDAs did not conclusively impact HRQOL. If this holds generally, then HRQOL is an uninformative endpoint for PtDA effectiveness trials. When planning trials of PtDAs, investigators considering HRQOL endpoints should consider whether and why their PtDA is likely to affect HRQOL in their context, and if so, which specific aspect(s) of HRQOL and at which time-point(s), and ensure HRQOL is assessed accordingly.
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http://dx.doi.org/10.1007/s11136-018-2045-7DOI Listing
March 2019

Added value of combining methotrexate with a biological agent compared to biological monotherapy in rheumatoid arthritis patients: A systematic review and meta-analysis of randomised trials.

Semin Arthritis Rheum 2019 06 9;48(6):958-966. Epub 2018 Oct 9.

Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital, Nordre Fasanvej 57, 2000 Copenhagen, Denmark.

Objectives: To assess the efficacy and safety of methotrexate (MTX) in combination with an approved biological agent compared to biological monotherapy, in the management of patients with rheumatoid arthritis (RA).

Methods: MEDLINE, EMBASE, CENTRAL and other sources were searched for randomised trials evaluating a biological agent plus MTX versus the same biological agent in monotherapy. Co-primary outcomes were ACR50 and the number of patients who discontinued due to adverse events (AEs). Random-effects models were applied for meta-analyses with risk ratio and 95% confidence intervals and the GRADE approach was used to assess confidence in the estimates.

Results: The analysis comprised 16 trials (4965 patients), including all biological agents approved for RA except anakinra and certolizumab. The overall likelihood of responding to therapy (i.e. ACR50) after 6 months was 32% better when MTX was given concomitantly with biological agents (1.32 [1.20-1.45]; P < 0.001) corresponding to 11 more out of 100 patients (7-16 more); Moderate Quality Evidence. Discontinuing due to AEs from concomitant use of MTX was potentially 20% increased (1.21 [0.97-1.50]; P = 0.09) compared to biological monotherapy corresponding to 1 more out of 100 patients (0-3 more); Moderate Quality Evidence.

Conclusions: Randomised trials provide Moderate Quality Evidence for a favourable benefit-harm balance supporting concomitant use of MTX rather than monotherapy when prescribing a biological agent in patients with RA although in absolute terms only 7-16 more out of 100 patients will achieve an ACR50 response after 6 months of this combination therapy.
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http://dx.doi.org/10.1016/j.semarthrit.2018.10.002DOI Listing
June 2019

Interventions for increasing the use of shared decision making by healthcare professionals.

Cochrane Database Syst Rev 2018 07 19;7:CD006732. Epub 2018 Jul 19.

Centre de recherche sur les soins et les services de première ligne de l'Université Laval (CERSSPL-UL), Université Laval, 2525, Chemin de la Canardière, Quebec, Québec, Canada, G1J 0A4.

Background: Shared decision making (SDM) is a process by which a healthcare choice is made by the patient, significant others, or both with one or more healthcare professionals. However, it has not yet been widely adopted in practice. This is the second update of this Cochrane review.

Objectives: To determine the effectiveness of interventions for increasing the use of SDM by healthcare professionals. We considered interventions targeting patients, interventions targeting healthcare professionals, and interventions targeting both.

Search Methods: We searched CENTRAL, MEDLINE, Embase and five other databases on 15 June 2017. We also searched two clinical trials registries and proceedings of relevant conferences. We checked reference lists and contacted study authors to identify additional studies.

Selection Criteria: Randomized and non-randomized trials, controlled before-after studies and interrupted time series studies evaluating interventions for increasing the use of SDM in which the primary outcomes were evaluated using observer-based or patient-reported measures.

Data Collection And Analysis: We used standard methodological procedures expected by Cochrane.We used GRADE to assess the certainty of the evidence.

Main Results: We included 87 studies (45,641 patients and 3113 healthcare professionals) conducted mainly in the USA, Germany, Canada and the Netherlands. Risk of bias was high or unclear for protection against contamination, low for differences in the baseline characteristics of patients, and unclear for other domains.Forty-four studies evaluated interventions targeting patients. They included decision aids, patient activation, question prompt lists and training for patients among others and were administered alone (single intervention) or in combination (multifaceted intervention). The certainty of the evidence was very low. It is uncertain if interventions targeting patients when compared with usual care increase SDM whether measured by observation (standardized mean difference (SMD) 0.54, 95% confidence interval (CI) -0.13 to 1.22; 4 studies; N = 424) or reported by patients (SMD 0.32, 95% CI 0.16 to 0.48; 9 studies; N = 1386; risk difference (RD) -0.09, 95% CI -0.19 to 0.01; 6 studies; N = 754), reduce decision regret (SMD -0.10, 95% CI -0.39 to 0.19; 1 study; N = 212), improve physical (SMD 0.00, 95% CI -0.36 to 0.36; 1 study; N = 116) or mental health-related quality of life (QOL) (SMD 0.10, 95% CI -0.26 to 0.46; 1 study; N = 116), affect consultation length (SMD 0.10, 95% CI -0.39 to 0.58; 2 studies; N = 224) or cost (SMD 0.82, 95% CI 0.42 to 1.22; 1 study; N = 105).It is uncertain if interventions targeting patients when compared with interventions of the same type increase SDM whether measured by observation (SMD 0.88, 95% CI 0.39 to 1.37; 3 studies; N = 271) or reported by patients (SMD 0.03, 95% CI -0.18 to 0.24; 11 studies; N = 1906); (RD 0.03, 95% CI -0.02 to 0.08; 10 studies; N = 2272); affect consultation length (SMD -0.65, 95% CI -1.29 to -0.00; 1 study; N = 39) or costs. No data were reported for decision regret, physical or mental health-related QOL.Fifteen studies evaluated interventions targeting healthcare professionals. They included educational meetings, educational material, educational outreach visits and reminders among others. The certainty of evidence is very low. It is uncertain if these interventions when compared with usual care increase SDM whether measured by observation (SMD 0.70, 95% CI 0.21 to 1.19; 6 studies; N = 479) or reported by patients (SMD 0.03, 95% CI -0.15 to 0.20; 5 studies; N = 5772); (RD 0.01, 95%C: -0.03 to 0.06; 2 studies; N = 6303); reduce decision regret (SMD 0.29, 95% CI 0.07 to 0.51; 1 study; N = 326), affect consultation length (SMD 0.51, 95% CI 0.21 to 0.81; 1 study, N = 175), cost (no data available) or physical health-related QOL (SMD 0.16, 95% CI -0.05 to 0.36; 1 study; N = 359). Mental health-related QOL may slightly improve (SMD 0.28, 95% CI 0.07 to 0.49; 1 study, N = 359; low-certainty evidence).It is uncertain if interventions targeting healthcare professionals compared to interventions of the same type increase SDM whether measured by observation (SMD -0.30, 95% CI -1.19 to 0.59; 1 study; N = 20) or reported by patients (SMD 0.24, 95% CI -0.10 to 0.58; 2 studies; N = 1459) as the certainty of the evidence is very low. There was insufficient information to determine the effect on decision regret, physical or mental health-related QOL, consultation length or costs.Twenty-eight studies targeted both patients and healthcare professionals. The interventions used a combination of patient-mediated and healthcare professional directed interventions. Based on low certainty evidence, it is uncertain whether these interventions, when compared with usual care, increase SDM whether measured by observation (SMD 1.10, 95% CI 0.42 to 1.79; 6 studies; N = 1270) or reported by patients (SMD 0.13, 95% CI -0.02 to 0.28; 7 studies; N = 1479); (RD -0.01, 95% CI -0.20 to 0.19; 2 studies; N = 266); improve physical (SMD 0.08, -0.37 to 0.54; 1 study; N = 75) or mental health-related QOL (SMD 0.01, -0.44 to 0.46; 1 study; N = 75), affect consultation length (SMD 3.72, 95% CI 3.44 to 4.01; 1 study; N = 36) or costs (no data available) and may make little or no difference to decision regret (SMD 0.13, 95% CI -0.08 to 0.33; 1 study; low-certainty evidence).It is uncertain whether interventions targeting both patients and healthcare professionals compared to interventions of the same type increase SDM whether measured by observation (SMD -0.29, 95% CI -1.17 to 0.60; 1 study; N = 20); (RD -0.04, 95% CI -0.13 to 0.04; 1 study; N = 134) or reported by patients (SMD 0.00, 95% CI -0.32 to 0.32; 1 study; N = 150 ) as the certainty of the evidence was very low. There was insuffient information to determine the effects on decision regret, physical or mental health-related quality of life, or consultation length or costs.

Authors' Conclusions: It is uncertain whether any interventions for increasing the use of SDM by healthcare professionals are effective because the certainty of the evidence is low or very low.
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http://dx.doi.org/10.1002/14651858.CD006732.pub4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6513543PMC
July 2018

The prevalence of patient engagement in published trials: a systematic review.

Res Involv Engagem 2018 22;4:17. Epub 2018 May 22.

Ottawa Hospital Research Institute, Ottawa, ON Canada.

Plain English Summary: With the growing movement to engage patients in research, questions are being asked about who is engaging patients and how they are being engaged. Internationally, research groups are supporting and funding patient-oriented research studies that engage patients in the identification of research priorities and the design, conduct and uptake of research. As we move forward, we need to know what meaningful patient engagement looks like, how it benefits research and clinical practice, and what are the barriers to patient engagement?We conducted a review of the published literature looking for trials that report engaging patients in the research. We included both randomized controlled trials and non-randomized comparative trials. We looked at these trials for important study characteristics, including how patients were engaged, to better understand the practices used in trials. Importantly, we also discuss the number of trials reporting patient engagement practices relative to all published trials. We found that very few trials report any patient engagement activities even though it is widely supported by many major funding organizations. The findings of our work will advance patient-oriented research by showing how patients can be engaged and by stressing that patient engagement practices need to be better reported.

Abstract:

Background: Patient-Oriented Research (POR) is research informed by patients and is centred on what is of importance to them. A fundamental component of POR is that patients are included as an integral part of the research process from conception to dissemination and implementation, and by extension, across the research continuum from basic research to pragmatic trials [J Comp Eff Res 2012, 1:181-94, JAMA 2012, 307:1587-8]. Since POR's inception, questions have been raised as to how best to achieve this goal.We conducted a systematic review of randomized controlled trials and non-randomized comparative trials that report engaging patients in their research. Our main goal was to describe the characteristics of published trials engaging patients in research, and to identify the extent of patient engagement activities reported in these trials.

Methods: The MEDLINE®, EMBASE®, Cinahl, PsycINFO, Cochrane Methodology Registry, and Pubmed were searched from May 2011 to June 16th, 2016. Title, abstract and full text screening of all reports were conducted independently by two reviewers. Data were extracted from included trials by one reviewer and verified by a second. All trials that report patient engagement for the purposes of research were included.

Results: Of the 9490 citations retrieved, 2777 were reviewed at full text, of which 23 trials were included. Out of the 23 trials, 17 were randomized control trials, and six were non-randomized comparative trials. The majority of these trials (83%, 19/23) originated in the United States and United Kingdom. The trials engaged a range of 2-24 patients/ community representatives per study. Engagement of children and minorities occurred in 13% (3/23) and 26% (6/23) of trials; respectively. Engagement was identified in the development of the research question, the selection of study outcomes, and the dissemination and implementation of results.

Conclusions: The prevalence of patient engagement in patient-oriented interventional research is very poor with 23 trials reporting activities engaging patients. Research dedicated to determining the best practice for meaningful engagement is still needed, but adequate reporting measures also need to be defined.
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http://dx.doi.org/10.1186/s40900-018-0099-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5963039PMC
May 2018

Development of a Canadian Core Clinical Dataset to Support High-quality Care for Canadian Patients with Rheumatoid Arthritis.

J Rheumatol 2017 Dec 1;44(12):1813-1822. Epub 2017 Oct 1.

From the Division of Rheumatology, Department of Medicine, and the Department of Community Health Sciences of the Cumming School of Medicine, and the McCaig Institute for Bone and Joint Health, University of Calgary, Calgary, Alberta; Arthritis Research Canada, Richmond; Division of Rheumatology, Department of Medicine, University of British Columbia, Vancouver, British Columbia; Division of Rheumatology, and the Department of Medicine and Laboratory Medicine and Pathobiology, and the Institute of Medical Science, and the Krembil Research Institute, University of Toronto, Toronto; Arthritis Alliance of Canada (AAC) Inflammatory Arthritis Models of Care, Toronto; William Osler Health System, Brampton; Canadian Institute of Health Research (CIHR) National Steering Committee, Ottawa; Outcome Measures in Rheumatology (OMERACT), Ottawa, Ontario; Hôpital Maisonneuve-Rosemont, and the Institut de Recherche en Rhumatologie de Montréal, Université de Montréal, Montreal, Quebec, Canada; RAND Corp., Santa Monica, California, USA.

Objective: To develop a Canadian Rheumatoid Arthritis Core Clinical Dataset (CAN-RACCD) to standardize documentation encouraging high-quality care.

Methods: A set of candidate elements was drafted through meetings with 27 rheumatologists, researchers, and patients, and supplemented with focused literature reviews. A 3-round online-modified Delphi consensus process was held with rheumatologists (n = 26), allied health professionals (n = 7), and patients (n = 4); for the remainder there was no demographic information. Participants rated both the importance and feasibility of documenting candidate elements on a Likert scale of 1-9, contributed to an online moderated discussion, and re-rated the elements for inclusion in the CAN-RACCD. Elements were included in the final set if importance and feasibility ratings had a median score of ≥ 6.5 and there was no disagreement among participants.

Results: Fifty-five individual elements in 10 subgroups were proposed to the Delphi participants: measures of RA disease activity; dates to calculate waiting times, disease duration, and disease-modifying antirheumatic drug start; comorbidities; smoking status; patient-reported pain and fatigue; physical function; laboratory and radiographic investigations; medications; clinical characteristics; and vaccines. All groups were included in the final set, with the exception of vaccination status. Additionally, 3 individual elements from the smoking subgroup were eliminated with a recommendation to record smoking status as never/ever/current, and 2 elements relating to coping and effect of fatigue were eliminated due to low feasibility and importance ratings.

Conclusion: The CAN-RACCD stands as a national recommendation on which data elements should be routinely collected in clinical practice to monitor and support high-quality RA care.
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http://dx.doi.org/10.3899/jrheum.170421DOI Listing
December 2017

Content and Construct Validity, Reliability, and Responsiveness of the Rheumatoid Arthritis Flare Questionnaire: OMERACT 2016 Workshop Report.

J Rheumatol 2017 Oct 15;44(10):1536-1543. Epub 2017 Aug 15.

From McGill University, Montreal, Quebec; University of British Columbia, Vancouver, British Columbia, Canada; Johns Hopkins University, Baltimore, Maryland; Hospital for Special Surgery, New York, New York; University of California, Los Angeles; Healthy Motivation, Santa Barbara, California, USA; Cardiff University, Cardiff; University of the West of England, Bristol, UK; Schlosspark-Klinik University Medicine, Berlin, Germany; Parker Institute, Copenhagen University, Copenhagen, Denmark; Sint Maartenskliniek, Nijmege; Vrije Universiteit (VU), Amsterdam, the Netherlands; Pierre et Marie Curie University, Paris; University of Lorraine, Lorraine, France; University of Sydney, Sydney, Australia.

Objective: The Outcome Measures in Rheumatology (OMERACT) Rheumatoid Arthritis (RA) Flare Group was established to develop a reliable way to identify and measure RA flares in randomized controlled trials (RCT). Here, we summarized the development and field testing of the RA Flare Questionnaire (RA-FQ), and the voting results at OMERACT 2016.

Methods: Classic and modern psychometric methods were used to assess reliability, validity, sensitivity, factor structure, scoring, and thresholds. Interviews with patients and clinicians also assessed content validity, utility, and meaningfulness of RA-FQ scores.

Results: People with RA in observational trials in Canada (n = 896) and France (n = 138), and an RCT in the Netherlands (n = 178) completed 5 items (11-point numerical rating scale) representing RA Flare core domains. There was moderate to high evidence of reliability, content and construct validity, and responsiveness. Factor analysis supported unidimensionality. Rasch analysis showed acceptable fit to the Rasch model, with items and people covering a broad measurement continuum and evidence of appropriate targeting of items to people, ordered thresholds, minimal differential item functioning by language, sex, or age. A summative score across items is defensible, yielding an interval score (0-50) where higher scores reflect worsening flare. The RA-FQ received endorsement from 88% of attendees that it passed the OMERACT Filter 2.0 "Eyeball Test" for instrument selection.

Conclusion: The RA-FQ has been developed to identify and measure RA flares. Its review through OMERACT Filter 2.0 shows evidence of reliability, content and construct validity, and responsiveness. These properties merit its further validation as an outcome for clinical trials.
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http://dx.doi.org/10.3899/jrheum.161145DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6649670PMC
October 2017

Toward the Development of a Core Set of Outcome Domains to Assess Shared Decision-making Interventions in Rheumatology: Results from an OMERACT Delphi Survey and Consensus Meeting.

J Rheumatol 2017 Oct 1;44(10):1544-1550. Epub 2017 Aug 1.

From the Children's Hospital of Eastern Ontario Research Institute, Ottawa; Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa, and Department of Epidemiology and Community Medicine, and Department of Medicine, Faculty of Medicine, University of Ottawa; School of Nursing, University of Ottawa; Integrated Knowledge Translation Network and University of Ottawa; Ottawa Hospital Research Institute, Centre for Practice-Changing Research and University of Ottawa; Bruyère Research Institute, Bruyère Continuing Care and School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Department of Epidemiology and Community Medicine, Faculty of Medicine, and Institute of Population Health, Centre for Global Health, University of Ottawa, Ottawa; Musculoskeletal Health and Outcomes Research, Li Ka Shing Knowledge Institute, St. Michael's Hospital; Institute for Work and Health, Institute Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario; Department of Physical Therapy, University of British Columbia; Arthritis Research Centre of Canada, Vancouver, British, Columbia; Department of Family Medicine and Emergency Medicine, Université Laval, Quebec City, Montreal, Canada; VA Portland Health Care System; Oregon Health and Science University, Portland, Oregon; Department of Internal Medicine, Yale University, New Haven, Connecticut; The Ohio State University, Columbus; Division of Rheumatology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio; Department of General Internal Medicine, Section of Rheumatology and Clinical Immunology, University of Texas MD Anderson Cancer Center, Houston, Texas, USA; School of Population and Global Health, University of Melbourne; Centre for Health Communication and Participation, School of Psychology and Public Health, La Trobe University, Melbourne; Western Sydney University and Faculty of Medicine, University of Sydney; Department of Medicine, University of Sydney, Institute of Bone and Joint Research and Department of Rheumatology, Royal North Shore Hospital, Sydney, Australia; VU Medical Centre, Amsterdam; Department Psychology, Health and Technology, University of Twente, Enschede; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Caphri Research Institute, Maastricht University, Maastricht; Access to Medicine Foundation, Haarlem, the Netherlands; Sorbonne Universités, UPMC Univ Paris 06, GRC-08; Pitie-Salpétrière Hospital, AP-HP, Rheumatology Department, Paris, France; Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital, Copenhagen, Denmark; Department of Internal Medicine II Rheumatology, Clinical Immunology, Osteology, Physical Therapy and Sports Medicine, Schlosspark-Klinik, Charité, University Medicine Berlin, Berlin, Germany; Rheumatology and Rehabilitation, Ain Shams University, Cairo, Egypt; King's College London, London, UK.

Objective: The aim of this Outcome Measures in Rheumatology (OMERACT) Working Group was to determine the core set of outcome domains and subdomains for measuring the effectiveness of shared decision-making (SDM) interventions in rheumatology clinical trials.

Methods: Following the OMERACT Filter 2.0, and based on a previous literature review of SDM outcome domains and a nominal group process at OMERACT 2014, (1) an online Delphi survey was conducted to gather feedback on the draft core set and refine its domains and subdomains, and (2) a workshop was held at the OMERACT 2016 meeting to gain consensus on the draft core set.

Results: A total of 170 participants completed Round 1 of the Delphi survey, and 116 completed Round 2. Respondents came from 29 countries, with 49% being patients/caregivers. Results showed that 14 out of the 17 subdomains within the 7 domains exceeded the 70% criterion (endorsement ranged from 83% to 100% of respondents). At OMERACT 2016, only 8% of the 96 attendees were patients/caregivers. Despite initial votes of support in breakout groups, there was insufficient comfort about the conceptualization of these 7 domains and 17 subdomains for these to be endorsed at OMERACT 2016 (endorsement ranged from 17% to 68% of participants).

Conclusion: Differences between the Delphi survey and consensus meeting may be explained by the manner in which the outcomes were presented, variations in participant characteristics, and the context of voting. Further efforts are needed to address the limited understanding of SDM and its outcomes among OMERACT participants.
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http://dx.doi.org/10.3899/jrheum.161241DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5624820PMC
October 2017

Montreal Accord on Patient-Reported Outcomes (PROs) use series - Paper 3: patient-reported outcomes can facilitate shared decision-making and guide self-management.

J Clin Epidemiol 2017 Sep 20;89:125-135. Epub 2017 Apr 20.

School of Physical and Occupational Therapy, McGill University, 3654 Prom Sir-William-Osler, Montreal, Québec, Canada H3G 1Y5; Divisions of Clinical Epidemiology, McGill University Health Center, 687 Pine Avenue W, Montreal, Québec, Canada H3A 1A1; Centre de recherche interdisciplinaire en réadaptation (CRIR), Constance-Lethbridge Rehabilitation Center, 2275 Laurier Ave E, Montreal, Quebec, Canada H2H 2N8.

Background: There is a shift toward making health care patient centered, whereby patients are part of medical decision-making and take responsibility for managing their health. Patient-reported outcomes (PROs) capture the patient voice and can be used to engage patients in medical decision-making.

Objective: The objective of this paper is to present important factors from patients', clinicians', researchers', and decision-makers' perspectives that influence successful adoption of PROs in clinical practice. Factors recommended in this paper were informed by a patient partner.

Discussion: Based on themes arising from the Montreal Accord proceedings, we describe factors that influence the adoption of PROs and how PROs can have a positive effect by enhancing communication and providing opportunities to engage patients, carers, and clinicians in care. Consideration of patient factors (e.g., health literacy), family support and networks (e.g., peer-support networks), technology (e.g., e-health), and health care system factors (e.g., resources to implement PROs) is necessary to ensure PROs are successfully adopted. PRO evaluation plans most likely to succeed over the long term are those incorporating PROs identified by patients as necessary for self-management and that coincide with providers' needs for collaboratively developing treatment plans with patients and families.
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http://dx.doi.org/10.1016/j.jclinepi.2017.04.017DOI Listing
September 2017

Decision aids for people facing health treatment or screening decisions.

Cochrane Database Syst Rev 2017 04 12;4:CD001431. Epub 2017 Apr 12.

The University of Sydney, Room 322, Edward Ford Building (A27), Sydney, NSW, Australia, 2006.

Background: Decision aids are interventions that support patients by making their decisions explicit, providing information about options and associated benefits/harms, and helping clarify congruence between decisions and personal values.

Objectives: To assess the effects of decision aids in people facing treatment or screening decisions.

Search Methods: Updated search (2012 to April 2015) in CENTRAL; MEDLINE; Embase; PsycINFO; and grey literature; includes CINAHL to September 2008.

Selection Criteria: We included published randomized controlled trials comparing decision aids to usual care and/or alternative interventions. For this update, we excluded studies comparing detailed versus simple decision aids.

Data Collection And Analysis: Two reviewers independently screened citations for inclusion, extracted data, and assessed risk of bias. Primary outcomes, based on the International Patient Decision Aid Standards (IPDAS), were attributes related to the choice made and the decision-making process.Secondary outcomes were behavioural, health, and health system effects.We pooled results using mean differences (MDs) and risk ratios (RRs), applying a random-effects model. We conducted a subgroup analysis of studies that used the patient decision aid to prepare for the consultation and of those that used it in the consultation. We used GRADE to assess the strength of the evidence.

Main Results: We included 105 studies involving 31,043 participants. This update added 18 studies and removed 28 previously included studies comparing detailed versus simple decision aids. During the 'Risk of bias' assessment, we rated two items (selective reporting and blinding of participants/personnel) as mostly unclear due to inadequate reporting. Twelve of 105 studies were at high risk of bias.With regard to the attributes of the choice made, decision aids increased participants' knowledge (MD 13.27/100; 95% confidence interval (CI) 11.32 to 15.23; 52 studies; N = 13,316; high-quality evidence), accuracy of risk perceptions (RR 2.10; 95% CI 1.66 to 2.66; 17 studies; N = 5096; moderate-quality evidence), and congruency between informed values and care choices (RR 2.06; 95% CI 1.46 to 2.91; 10 studies; N = 4626; low-quality evidence) compared to usual care.Regarding attributes related to the decision-making process and compared to usual care, decision aids decreased decisional conflict related to feeling uninformed (MD -9.28/100; 95% CI -12.20 to -6.36; 27 studies; N = 5707; high-quality evidence), indecision about personal values (MD -8.81/100; 95% CI -11.99 to -5.63; 23 studies; N = 5068; high-quality evidence), and the proportion of people who were passive in decision making (RR 0.68; 95% CI 0.55 to 0.83; 16 studies; N = 3180; moderate-quality evidence).Decision aids reduced the proportion of undecided participants and appeared to have a positive effect on patient-clinician communication. Moreover, those exposed to a decision aid were either equally or more satisfied with their decision, the decision-making process, and/or the preparation for decision making compared to usual care.Decision aids also reduced the number of people choosing major elective invasive surgery in favour of more conservative options (RR 0.86; 95% CI 0.75 to 1.00; 18 studies; N = 3844), but this reduction reached statistical significance only after removing the study on prophylactic mastectomy for breast cancer gene carriers (RR 0.84; 95% CI 0.73 to 0.97; 17 studies; N = 3108). Compared to usual care, decision aids reduced the number of people choosing prostate-specific antigen screening (RR 0.88; 95% CI 0.80 to 0.98; 10 studies; N = 3996) and increased those choosing to start new medications for diabetes (RR 1.65; 95% CI 1.06 to 2.56; 4 studies; N = 447). For other testing and screening choices, mostly there were no differences between decision aids and usual care.The median effect of decision aids on length of consultation was 2.6 minutes longer (24 versus 21; 7.5% increase). The costs of the decision aid group were lower in two studies and similar to usual care in four studies. People receiving decision aids do not appear to differ from those receiving usual care in terms of anxiety, general health outcomes, and condition-specific health outcomes. Studies did not report adverse events associated with the use of decision aids.In subgroup analysis, we compared results for decision aids used in preparation for the consultation versus during the consultation, finding similar improvements in pooled analysis for knowledge and accurate risk perception. For other outcomes, we could not conduct formal subgroup analyses because there were too few studies in each subgroup.

Authors' Conclusions: Compared to usual care across a wide variety of decision contexts, people exposed to decision aids feel more knowledgeable, better informed, and clearer about their values, and they probably have a more active role in decision making and more accurate risk perceptions. There is growing evidence that decision aids may improve values-congruent choices. There are no adverse effects on health outcomes or satisfaction. New for this updated is evidence indicating improved knowledge and accurate risk perceptions when decision aids are used either within or in preparation for the consultation. Further research is needed on the effects on adherence with the chosen option, cost-effectiveness, and use with lower literacy populations.
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http://dx.doi.org/10.1002/14651858.CD001431.pub5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6478132PMC
April 2017

Emerging Guidelines for Patient Engagement in Research.

Value Health 2017 03 17;20(3):481-486. Epub 2016 Nov 17.

Divisions of Clinical Epidemiology, Rheumatology and Respirology. McGill University, Montreal, QC. Electronic address:

There is growing recognition that involving patients in the development of new patient-reported outcome measures helps ensure that the outcomes that matter most to people living with health conditions are captured. Here, we describe and discuss different experiences of integrating patients as full patient research partners (PRPs) in outcomes research from multiple perspectives (e.g., researcher, patient, and funder), drawing from three real-world examples. These diverse experiences highlight the strengths, challenges, and impact of partnering with patients to conceptualize, design, and conduct research and disseminate findings. On the basis of our experiences, we suggest basic guidelines for outcomes researchers on establishing research partnerships with patients, including: 1) establishing supportive organizational/institutional policies; 2) cultivating supportive attitudes of researchers and PRPs with recognition that partnerships evolve over time, are grounded in strong communication, and have shared goals; 3) adhering to principles of respect, trust, reciprocity, and co-learning; 4) addressing training needs of all team members to ensure communications and that PRPs are conversant in and familiar with the language and process of research; 5) identifying the resources and advanced planning required for successful patient engagement; and 6) recognizing the value of partnerships across all stages of research. The three experiences presented explore different approaches to partnering; demonstrate how this can fundamentally change the way research work is conceptualized, conducted, and disseminated; and can serve as exemplars for other forms of patient-centered outcomes research. Further work is needed to identify the skills, qualities, and approaches that best support effective patient-researcher partnerships.
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March 2017

Health Equity Considerations for Developing and Reporting Patient-reported Outcomes in Clinical Trials: A Report from the OMERACT Equity Special Interest Group.

J Rheumatol 2017 Nov 15;44(11):1727-1733. Epub 2017 Feb 15.

From the Bruyère Research Institute, University of Ottawa; Ottawa Hospital Research Institute and School of Epidemiology, Public Health and Preventative Medicine, University of Ottawa; Cochrane Musculoskeletal Group, University of Ottawa; Children's Hospital of Eastern Ontario Research Institute; Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa; Department of Medicine, Faculty of Medicine, University of Ottawa; Ottawa Hospital Research Institute, Clinical Epidemiology Program; Department of Epidemiology and Community Medicine, Faculty of Medicine, University of Ottawa, Ottawa; Musculoskeletal Health and Outcomes Research, Li Ka Shing Knowledge Institute, St. Michael's Hospital; Institute for Work and Health; Occupational Science and Occupational Therapy, Rehabilitation Sciences Institute, Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, Ontario; Departments of Medicine and Community Health Sciences, University of Calgary, Calgary, Alberta; Division of Rheumatology Department of Medicine, University of British Columbia (UBC); Department of Occupational Science and Occupational Therapy, Faculty of Medicine, UBC, Vancouver; Arthritis Research Canada, Richmond; Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada; Veterans Affairs Portland Health Care System, Oregon Health and Science University, Portland, Oregon; Division of Rheumatology, Duke University School of Medicine, Durham, North Carolina; Quintiles IMS, Denver, Colorado; Department of Medicine, Rheumatology Division, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin; University of Alabama at Birmingham; Birmingham Veterans Affairs Medical Center, Birmingham, Alabama; Department of Orthopedics, Mayo Clinic College of Medicine, Rochester, Minnesota; Penn Vasculitis Center, Division of Rheumatology, The University of Pennsylvania, Philadelphia, Pennsylvania, USA; University of the West of England, Bristol, UK; VU University Medical Centre, Department Medical Humanities, EMGO+ Research Institute, Amsterdam; Department Internal Medicine, Division of Rheumatology, Maastricht University Medical Center; Caphri Graduate School Maastricht University, Maastricht, the Netherlands; Musculoskeletal Statistics Unit, The Parker Institute; Frederiksberg Hospital, Copenhagen, Denmark; Department Internal Medicine II, Rheumatology, Schlosspark-Klinik Berlin, Charité - Medical University Berlin, Berlin, Germany; Monash Department of Clinical Epidemiology, Cabrini Institute and Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia; University of Lorraine, Nancy, France.

Objective: Despite advances integrating patient-centered outcomes into rheumatologic studies, concerns remain regarding their representativeness across diverse patient groups and how this affects equity. The Outcome Measures in Rheumatology (OMERACT) Equity Working Group aims to determine whether and how to address equity issues within the core outcome sets of domains and instruments.

Methods: We surveyed current and previous OMERACT meeting attendees and members of the Campbell and Cochrane Equity Group regarding whether to address equity issues within the OMERACT Filter 2.0 Core Outcome Sets and how to assess the appropriateness of domains, instruments, and measurement properties among diverse patients. At OMERACT 2016, results of the survey and a narrative review of differential psychosocial effects of rheumatoid arthritis (i.e., on men) were presented to stimulate discussion and develop a research agenda.

Results: We proposed 6 moments for which an equity lens could be added to the development, selection, or testing of patient-reported outcome measures (PROM): (1) recruitment, (2) domain selection, (3) feasibility in diverse settings, (4) instrument validity, (5) thresholds of meaning, and (6) consideration of statistical power of subgroup analyses for outcome reporting.

Conclusion: There is a need to (1) conduct a systematic review to assess how equity and population characteristics have been considered in PROM development and whether these differences influence the ranking of importance of outcome domains or a patient's response to questionnaire items, and (2) conduct the same survey described above with patients representing groups experiencing health inequities.
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http://dx.doi.org/10.3899/jrheum.160975DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5800396PMC
November 2017

Marine Oil Supplements for Arthritis Pain: A Systematic Review and Meta-Analysis of Randomized Trials.

Nutrients 2017 Jan 6;9(1). Epub 2017 Jan 6.

Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital, 2000 Copenhagen F, Denmark.

Arthritis patients often take fish oil supplements to alleviate symptoms, but limited evidence exists regarding their efficacy. The objective was to evaluate whether marine oil supplements reduce pain and/or improve other clinical outcomes in patients with arthritis. Six databases were searched systematically (24 February 2015). We included randomized trials of oral supplements of all marine oils compared with a control in arthritis patients. The internal validity was assessed using the Cochrane Risk of Bias tool and heterogeneity was explored using restricted maximum of likelihood (REML)-based meta-regression analysis. Grading of Recommendations Assessment, Development and Evaluation (GRADE) was used to rate the overall quality of the evidence. Forty-two trials were included; 30 trials reported complete data on pain. The standardized mean difference (SMD) suggested a favorable effect (-0.24; 95% confidence interval, CI, -0.42 to -0.07; heterogeneity, ² = 63%. A significant effect was found in patients with rheumatoid arthritis (22 trials; -0.21; 95% CI, -0.42 to -0.004) and other or mixed diagnoses (3 trials; -0.63; 95% CI, -1.20 to -0.06), but not in osteoarthritis patients (5 trials; -0.17; 95% CI, -0.57-0.24). The evidence for using marine oil to alleviate pain in arthritis patients was overall of low quality, but of moderate quality in rheumatoid arthritis patients.
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http://dx.doi.org/10.3390/nu9010042DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5295086PMC
January 2017

Stiffness Is the Cardinal Symptom of Inflammatory Musculoskeletal Diseases, Yet Still Variably Measured: Report from the OMERACT 2016 Stiffness Special Interest Group.

J Rheumatol 2017 Dec 15;44(12):1904-1910. Epub 2016 Dec 15.

From the Department of Nursing and Midwifery, University of the West of England; University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds; Department of Rheumatology, Ashford and St. Peter's National Health Service (NHS) Foundation Trust, Chertsey; Patient Research Partner PMR-GCA Scotland, Forest Lodge, Foulden, Berwickshire, UK; Institute of Bone and Joint Research, Kolling Institute, Northern Sydney Local Health District; Department of Rheumatology, Royal North Shore Hospital, New South Wales; University of Sydney, Sydney; Rheumatology Unit, The Queen Elizabeth Hospital, Adelaide; Discipline of Medicine, University of Adelaide, Adelaide, Australia; Division of Clinical Epidemiology, Division of Rheumatology, and Division Respiratory Epidemiology, McGill University/McGill University Health Centers, Montreal, Québec; Patient Research Partner, Toronto Western Hospital, Toronto; Cochrane Musculoskeletal Group, Institute of Population Health, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland; University of Illinois-Chicago, Chicago, Illinois; Healthy Motivation and Global Alliance for Musculoskeletal Health the Bone and Joint Decade, Santa Barbara, California, USA; Schlosspark-Klinik, University Medicine Berlin, Berlin, Germany; Horizon Pharma LTD, Dublin, Ireland; Department of Rheumatology and Immunology, Singapore General Hospital, Singapore.

Objective: The objectives of the Outcome Measures in Rheumatology (OMERACT) Stiffness special interest group (SIG) are to characterize stiffness as an outcome in rheumatic disease and to identify and validate a stiffness patient-reported outcome (PRO) in rheumatology.

Methods: At OMERACT 2016, international groups presented and discussed results of several concurrent research projects on stiffness: a literature review of rheumatoid arthritis (RA) stiffness PRO measures, a qualitative investigation into the RA and polymyalgia rheumatica patient perspective of stiffness, data-driven stiffness conceptual model development, development and testing of an RA stiffness PRO measure, and a quantitative work testing stiffness items in patients with RA and psoriatic arthritis.

Results: The literature review identified 52 individual stiffness PRO measures assessing morning or early morning stiffness severity/intensity or duration. Items were heterogeneous, had little or inconsistent psychometric property evidence, and did not appear to have been developed according to the PRO development guidelines. A poor match between current stiffness PRO and the conceptual model identifying the RA patient experience of stiffness was identified, highlighting a major flaw in PRO selection according to the OMERACT filter 2.0.

Conclusion: Discussions within the Stiffness SIG highlighted the importance of further research on stiffness and defined a research agenda.
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http://dx.doi.org/10.3899/jrheum.161073DOI Listing
December 2017

Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research: an international, multiple-stakeholder perspective.

Qual Life Res 2017 06 8;26(6):1393-1404. Epub 2016 Dec 8.

The School of Life and Medical Sciences, University of Hertfordshire, Hatfield, UK.

Purpose: Active patient engagement is increasingly viewed as essential to ensuring that patient-driven perspectives are considered throughout the research process. However, guidance for patient engagement (PE) in HRQoL research does not exist, the evidence-base for practice is limited, and we know relatively little about underpinning values that can impact on PE practice. This is the first study to explore the values that should underpin PE in contemporary HRQoL research to help inform future good practice guidance.

Methods: A modified 'World Café' was hosted as a collaborative activity between patient partners, clinicians and researchers: self-nominated conference delegates participated in group discussions to explore values associated with the conduct and consequences of PE. Values were captured via post-it notes and by nominated note-takers. Data were thematically analysed: emergent themes were coded and agreement checked. Association between emergent themes, values and the Public Involvement Impact Assessment Framework were explored.

Results: Eighty participants, including 12 patient partners, participated in the 90-min event. Three core values were defined: (1) building relationships; (2) improving research quality and impact; and (3) developing best practice. Participants valued the importance of building genuine, collaborative and deliberative relationships-underpinned by honesty, respect, co-learning and equity-and the impact of effective PE on research quality and relevance.

Conclusions: An explicit statement of values seeks to align all stakeholders on the purpose, practice and credibility of PE activities. An innovative, flexible and transparent research environment was valued as essential to developing a trustworthy evidence-base with which to underpin future guidance for good PE practice.
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http://dx.doi.org/10.1007/s11136-016-1465-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5420368PMC
June 2017

Development and Alpha-testing of a Stepped Decision Aid for Patients Considering Nonsurgical Options for Knee and Hip Osteoarthritis Management.

J Rheumatol 2016 10 1;43(10):1891-1896. Epub 2016 Sep 1.

From the Children's Hospital of Eastern Ontario Research Institute; these departments of the University of Ottawa: Department of Pediatrics, Institute of Population Health, Centre for Global Health, School of Nursing, Bruyere Research Institute, Department of Medicine, Department of Epidemiology and Community Medicine, Cochrane Musculoskeletal Group and the Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa; Department of Medicine, University of Toronto, Toronto; Women's College Hospital, and Women's College Research Institute, Toronto; Division of Rheumatology and The Arthritis Program, Southlake Regional Health Centre, Newmarket, Ontario, Canada.K. Toupin April, PhD, Associate Scientist, Children's Hospital of Eastern Ontario Research Institute, Assistant Professor, Department of Pediatrics, University of Ottawa; T. Rader, MLIS, Institute of Population Health, Trials Search Coordinator and Knowledge Translation Specialist, University of Ottawa; G.A. Hawker, MD, FRCPC, Chair, Department of Medicine, University of Toronto, Women's College Hospital, Senior Scientist, Women's College Research Institute; D. Stacey, RN, PhD, Full Professor, School of Nursing, University of Ottawa, and Scientist at the Ottawa Hospital Research Institute; J. Pardo Pardo, Managing Editor, Cochrane Musculoskeletal Group, University of Ottawa, Ottawa Hospital Research Institute; A.M. O'Connor, PhD, Emeritus Professor, School of Nursing, University of Ottawa; V. Welch, PhD, Bruyere Research Institute, University of Ottawa, Deputy Director, Institute of Population Health, Centre for Global Health, University of Ottawa; A. Lyddiatt, Consumer Editor, Cochrane Musculoskeletal Group, University of Ottawa; J. McGowan, MLIS, PhD, AHIP, Adjunct Professor, Department of Medicine, University of Ottawa; J.C. Thorne, MD, FRCP, FACP, Chief of the Division of Rheumatology and Director of The Arthritis Program, Southlake Regional Health Centre; C. Bennett, PT, MSc, Ottawa Hospital Research Institute; G.A. Wells, PhD, Professor, Department of Epidemiology and Community Medicine, University of Ottawa; P. Tugwell, MSc, MD, FRCPC, FCAHS, Professor, Department of Medicine, Faculty of Medicine, University of Ottawa, Senior Scientist, Clinical Epidemiology Program, Ottawa Hospital Research Institute, Department of Epidemiology and Community Medicine, Faculty of Medicine, University of Ottawa, Institute of Population Health, Centre for Global Health, University of Ottawa.

Objective: To develop an innovative stepped patient decision aid (StDA) comparing the benefits and harms of 13 nonsurgical treatment options for managing osteoarthritis (OA) and to evaluate its acceptability and effects on informed decision making.

Methods: Guided by the Ottawa Decision Support Framework and the International Patient Decision Aid Standards, the process involved (1) developing a decision aid with evidence on 13 nonsurgical treatments from the 2012 American College of Rheumatology OA clinical practice guidelines; and (2) interviewing patients with OA and healthcare providers to test its acceptability and effects on knowledge and decisional conflict.

Results: The StDA helped make the decision explicit, and presented evidence on 13 OA treatments clustered into 5 steps or levels according to their benefits and harms. Probabilities of benefits and harms were presented using pictograms of 100 faces formatted to allow comparisons across sets of options. It also included a values clarification exercise and knowledge test. Feedback was obtained from 49 patients and 7 healthcare providers. They found that the StDA presented evidence in a clear manner, and helped patients clarify their values and make an informed decision. Some participants found that there was too much information and others said that there was not enough on each treatment option.

Conclusion: This innovative StDA allows patients to consider both the evidence and their values for multiple options. The findings are being used to revise and plan future evaluation. The StDA is an example of how research evidence in guidelines can be implemented in practice.
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http://dx.doi.org/10.3899/jrheum.150736DOI Listing
October 2016

Wait times to rheumatology care for patients with rheumatic diseases: a data linkage study of primary care electronic medical records and administrative data.

CMAJ Open 2016 Apr-Jun;4(2):E205-12. Epub 2016 May 11.

Department of Clinical Epidemiology (Widdifield, Bernatsky), McGill University Health Centre, Montréal, Que.; Department of Epidemiology, Biostatistics and Occupational Health (Widdifield, Bernatsky), McGill University, Montréal, Que.; Department of Rheumatology (Thorne), Southlake Regional Health Centre, Newmarket, Ont.; Departments of Family and Community Medicine (Jaakkimainen, Ivers, Butt, Tu) and Rheumatology (Bombardier), University of Toronto, Toronto, Ont.; Department of Family Medicine (Paterson), McMaster University, Hamilton, Ont.; Department of Family and Community Medicine (Ivers), Women's College Hospital, Toronto, Ont.; Department of Family Medicine (Butt), Scarborough Hospital, Toronto, Ont.; Patient representative (Lyddiatt), Ingersoll, Ont.; Patient representative (Hofstetter), Toronto, Ont.; Department of Rheumatology (Ahluwalia), William Osler Health Centre, Brampton, Ont.

Background: The Wait Time Alliance recently established wait time benchmarks for rheumatology consultations in Canada. Our aim was to quantify wait times to primary and rheumatology care for patients with rheumatic diseases.

Methods: We identified patients from primary care practices in the Electronic Medical Record Administrative data Linked Database who had referrals to Ontario rheumatologists over the period 2000-2013. To assess the full care pathway, we identified dates of symptom onset, presentation in primary care and referral from electronic medical records. Dates of rheumatologist consultations were obtained by linking with physician service claims. We determined the duration of each phase of the care pathway (symptom onset to primary care encounter, primary care encounter to referral, and referral to rheumatologist consultation) and compared them with established benchmarks.

Results: Among 2430 referrals from 168 family physicians, 2015 patients (82.9%) were seen by 146 rheumatologists within 1 year of referral. Of the 2430 referrals, 2417 (99.5%) occurred between 2005 and 2013. The main reasons for referral were osteoarthritis (32.4%) and systemic inflammatory rheumatic diseases (30.6%). Wait times varied by diagnosis and geographic region. Overall, the median wait time from referral to rheumatologist consultation was 74 (interquartile range 27-101) days; it was 66 (interquartile range 18-84) days for systemic inflammatory rheumatic diseases. Wait time benchmarks were not achieved, even for the most urgent types of referral. For systemic inflammatory rheumatic diseases, most of the delays occurred before referral.

Interpretation: Rheumatology wait times exceeded established benchmarks. Targeted efforts are needed to promote more timely access to both primary and rheumatology care. Routine linkage of electronic medical records with administrative data may help fill important gaps in knowledge about waits to primary and specialty care.
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http://dx.doi.org/10.9778/cmajo.20150116DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4933643PMC
July 2016

Translating Evidence to Facilitate Shared Decision Making: Development and Usability of a Consult Decision Aid Prototype.

Patient 2016 12;9(6):571-582

Department of Medicine, University of Ottawa and Clinical Epidemiology Program, Ottawa, Canada.

Aim: The purpose of this study was to translate evidence from Cochrane Reviews into a format that can be used to facilitate shared decision making during the consultation, namely patient decision aids.

Methods: A systematic development process (a) established a stakeholder committee; (b) developed a prototype according to the International Patient Decision Aid Standards; (c) applied the prototype to a Cochrane Review and used an interview-guided survey to evaluate acceptability/usability; (d) created 12 consult decision aids; and (e) used a Delphi process to reach consensus on considerations for creating a consult decision aid.

Results: The 1-page prototype includes (a) a title specifying the decision; (b) information on the health condition, options, benefits/harms with probabilities; (c) an explicit values clarification exercise; and (d) questions to screen for decisional conflict. Hyperlinks provide additional information on definitions, probabilities presented graphically, and references. Fourteen Cochrane Consumer Network members and Cochrane Editorial Unit staff participated. Thirteen reported that it would help patient/clinician discussions and were willing to use and/or recommend it. Seven indicated the right amount of information, six not enough, and one too much. Changes to the prototype were more links to definitions, more white space, and details on GRADE evidence ratings. Creating 12 consult decision aids took about 4 h each. We identified ten considerations when selecting Cochrane Reviews for creating consult decision aids.

Conclusions: Using a systematic process, we developed a consult decision aid prototype to be populated with evidence from Cochrane Reviews. It was acceptable and easy to apply. Future studies will evaluate implementation of consult decision aids.
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http://dx.doi.org/10.1007/s40271-016-0177-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5107194PMC
December 2016

Patterns of Care Among Patients Referred to Rheumatologists in Ontario, Canada.

Arthritis Care Res (Hoboken) 2017 01 16;69(1):104-114. Epub 2016 Nov 16.

McGill University, Montreal, Quebec, Canada.

Objective: Our aim was to characterize referrals to rheumatologists, the early care management of patients with rheumatic diseases, and timeliness of care and treatment.

Methods: We conducted a retrospective observational study involving patients with first-time rheumatology referrals between 2000 and 2013 in the primary care Electronic Medical Record Administrative data Linked Database (EMRALD) in Ontario, Canada. Referrals were characterized in terms of diagnoses, patient demographics, diagnostic tests, treatment initiated by family physicians and rheumatologists, and other specialists seen prior to rheumatology consultation. Timeliness of referrals, rheumatologist consultations, and treatment were determined overall and for each diagnostic category.

Results: Among 2,430 patients referred to a rheumatologist, 69% were female, with an average age of 53 years. The principal diagnosis associated with the referral included osteoarthritis (32%), systemic inflammatory rheumatic diseases (31%), regional musculoskeletal conditions (16%), chronic pain conditions (14%), osteoporosis (2%), and other/miscellaneous (5%). Family physicians most frequently prescribed nonsteroidal antiinflammatory drugs/cyclooxygenase 2 inhibitors (38%), and their pre-referral diagnostic testing practice varied considerably. The duration of time from symptom onset to rheumatology consultation varied by diagnoses, with the shortest being for patients with systemic rheumatic diseases; for rheumatoid arthritis (RA), the median time to consultation was 327 days. Most of the delay occurred prior to referral; 36% of RA patients initiated a disease-modifying antirheumatic drug within 6 months of symptom onset.

Conclusion: Approximately 1 in 3 referrals to rheumatologists were for a systemic inflammatory rheumatic disease. We observed substantial delays to rheumatology consultations and variations in patterns of care that could be amenable to quality improvement interventions.
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http://dx.doi.org/10.1002/acr.22910DOI Listing
January 2017

Current State of Reporting Pain Outcomes in Cochrane Reviews of Chronic Musculoskeletal Pain Conditions and Considerations for an OMERACT Research Agenda.

J Rheumatol 2015 Oct 15;42(10):1934-1942. Epub 2015 Sep 15.

From the Ottawa Hospital Research Institute, Centre for Practice-Changing Research, Ottawa, Canada; School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa and Cardiovascular Research Methods Centre, University of Ottawa Heart Institute, Ottawa, Canada; SDG LLC Cambridge, MA, USA; Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds and NIHR Leeds Musculoskeletal Biomedical Research Unit, Leeds, UK; University of Ottawa; Institute of Population Health, University of Ottawa, Ottawa; Institute for Work & Health, Toronto, Canada; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, MD, USA; Department of Anesthesia, Department of Clinical Epidemiology and Biostatistics, and the Michael G. DeGroote Institute for Pain Research and Care, McMaster University, Hamilton, Canada; Musculoskeletal Statistics Unit, The Parker Institute, Department of Rheumatology, Bispebjerg and Frederiksberg Hospital, Copenhagen, Denmark; Quintiles, Inc., Division of Rheumatology, Department of Medicine, Duke University School of Medicine, Durham, NC, USA; Institute of Primary Health Care (BIHAM), University of Bern, Bern, Switzerland; University Hospital Carl Gustav Carus, Dresden, Germany; University of Washington, Seattle, WA, USA; Department of Health Sciences (VU University) and Department of Epidemiology and Biostatistics (VU University Medical Centre) of the EMGO Institute for Health and Care Research, Amsterdam, The Netherlands; Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA; Laboratory for Pain Research, University of Split School of Medicine, Split, Croatia; Birmingham Veterans Affairs Medical Center and University of Alabama at Birmingham, Birmingham, AL, USA; Division Immunology/Rheumatology Stanford University School of Medicine, Palo Alto, CA, USA; Institute of Infection and Immunity, Cardiff University, Cardiff, UK; Department of Epidemiology and Biostatistics and the EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, The Netherlands; University of Ottawa, Department of Medicine, Faculty of Medicine, Ottawa Hospital Research Institute; Clinical Epidemiology Program, University of Ottawa and School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa; Faculty of Medicine, Institute of Population Health, Ottawa, Canada.

Objective: To assess the current state of reporting of pain outcomes in Cochrane reviews on chronic musculoskeletal painful conditions and to elicit opinions of patients, healthcare practitioners, and methodologists on presenting pain outcomes to patients, clinicians, and policymakers.

Methods: We identified all reviews in the Cochrane Library of chronic musculoskeletal pain conditions from Cochrane review groups (Back, Musculoskeletal, and Pain, Palliative, and Supportive Care) that contained a summary of findings (SoF) table. We extracted data on reported pain domains and instruments and conducted a survey and interviews on considerations for SoF tables (e.g., pain domains, presentation of results).

Results: Fifty-seven SoF tables in 133 Cochrane reviews were eligible. SoF tables reported pain in 56/57, with all presenting results for pain intensity (20 different outcome instruments), pain interference in 8 SoF tables (5 different outcome instruments), and pain frequency in 1 multiple domain instrument. Other domains like pain quality or pain affect were not reported. From the survey and interviews [response rate 80% (36/45)], we derived 4 themes for a future research agenda: pain domains, considerations for assessing truth, discrimination, and feasibility; clinically important thresholds for responder analyses and presenting results; and establishing hierarchies of outcome instruments.

Conclusion: There is a lack of standardization in the domains of pain selected and the manner that pain outcomes are reported in SoF tables, hampering efforts to synthesize evidence. Future research should focus on the themes identified, building partnerships to achieve consensus and develop guidance on best practices for reporting pain outcomes.
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http://dx.doi.org/10.3899/jrheum.141423DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6649665PMC
October 2015
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