Navigating the path of progress: The OMERACT 2023 emerging leaders program.

OBJECTIVES: The Outcome Measures in Rheumatology Clinical Trials (OMERACT) Emerging Leaders Program (ELP) aims to cultivate a cohort of skilled leaders within the OMERACT community empowering them with expertise and knowledge to help shape and steer the organization into the future. This publication highlights the significance of the ELP in driving leadership excellence, its impact on OMERACT's evolution, and the outcomes and learnings from the OMERACT 2023 ELP. METHODS: Insights from the 2018 ELP report informed 2023 program improvements. Engagement was measured by attendance and WhatsApp interactions. Positive program aspects, areas for improvement and ideas for enhancing future ELPs were captured via anonymous survey and participant focus groups. RESULTS: Engagement with the ELP was high with 9 participants, 96 % attendance at all workshops, 154 WhatsApp interactions. All program components were highly rated, with the highest being the 'Psychological Safety' and 'Methodology/Process/Politics' workshops. Future enhancements included creating further networking, connection and support activities, practical leadership and methodological skill development opportunities, and a new stream focussing on organisational advancement. CONCLUSIONS: The 2023 OMERACT ELP was well received and successfully addressed areas previously identified as requiring improvement. New educational enhancements were valued, and the importance of fostering psychological safety at all levels was highlighted. The ELP fortifies OMERACT by nurturing a diverse array of skilled leaders who embody OMERACTs core values. Continuing to refine and evolve the ELP over time will help OMERACT sustain its global influence in patient-centered outcome research.

Endorsement of the domains of knee and hip osteoarthritis (OA) flare: A report from the OMERACT 2020 inaugural virtual consensus vote from the flares in OA working group.

OBJECTIVE: Towards developing an instrument to measure knee and hip osteoarthritis (KHOA) flare, the Outcome Measures in Rheumatology (OMERACT) Flares in OA Working Group first sought to identify and define relevant domains of flare in KHOA. METHODS: Guided by OMERACT Filter 2.1, candidate domains were identified from data generated in interviews, in English or French, with persons with KHOA and health professionals (HPs) who treat OA. The first and second rounds of an online Delphi process with patients and HPs, including researchers, selected relevant domains. The third round provided agreement on the selected domains and their definitions. At the virtual OMERACT 2020 workshop, the proposed domains and their definitions were discussed in facilitated breakout groups with patients and HPs. Participants then voted, with consensus set at ≥70%. RESULTS: Qualitative interviews characterizing OA flare were completed with 29 persons with KHOA and 16 HPs. Content was analyzed and grouped into nine clusters. These candidate domains were included in two Delphi rounds, completed by 91 patients and 165 HPs then 50 patients and 116 HPs, per round, respectively. This resulted in selecting five relevant domains. A final Delphi round, completed by 38 patients and 89 HPs, provided agreement on these domains and their definitions. The OMERACT virtual vote included 27 patients and 106 HPs. The domains and their definitions were endorsed with ≥98% agreement. Domains include: Pain, Swelling, Stiffness, Psychological aspects, and Impact of symptoms, all defined "during flare". CONCLUSION: Using OMERACT methodology, we have developed five domains of KHOA flare that were highly endorsed by patients and HPs.

Leisure in children and adolescents with juvenile idiopathic arthritis: a systematic review.

UNLABELLED: The aim of this systematic review is to describe participation in social and physical leisure activities among children and adolescents with JIA, as well as identify potential determinants of leisure participation. METHODS: Electronic databases were systematically searched for articles published up until June 2013 pertaining to participation in leisure activities among youth with JIA and other rheumatic diseases. Studies were included if they measured involvement in either social or physical leisure activities. Selection and quality appraisal of articles were completed independently by two authors. RESULTS: Eight hundred and ninety-three articles were found through electronic and reference search. One hundred and nine full articles were reviewed to assess for eligibility. Twelve articles met inclusion criteria and findings were reviewed. Most focused on describing participation in physical rather than social activities. Results suggest that youth with JIA participated less in both social and physical leisure activities as compared to healthy peers, and those with JIA did not meet national recommendations for physical activity. Potential determinants of leisure participation were socio-demographic (age, sex), anthropometric (height, weight) and disease-related (JIA subtype, disease duration, pain, number of swollen or painful joints, stiffness, fatigue, well-being) factors. CONCLUSION: Characterization of leisure activity remains limited and mostly focused on physical activity in JIA. Assessment of more comprehensive outcome measures is warranted to obtain a better description of leisure in this population. Evidence of the influence of contextual factors as potential determinants of involvement in leisure among children with pediatric rheumatologic diseases is needed.

A qualitative study on the term CAM: is there a need to reinvent the wheel?

BACKGROUND: As complementary and alternative medicine (CAM) has developed extensively, uncertainty about the appropriateness of the terms CAM and other CAM-related terms has grown both in the research and practice communities. Various terms and definitions have been proposed over the last three decades, highlighting how little agreement exits in the field. Contextual use of current terms and their respective definitions needs to be discussed and addressed. METHODS: Relying upon the results of a large international Delphi survey on the adequacy of the term CAM, a focus group of 13 international experts in the field of CAM was held. A forum was also set up for 28 international experts to discuss and refine proposed definitions of both CAM and integrative healthcare (IHC) terms. Audio recordings of the meeting and forum discussion threads were analyzed using interpretive description. RESULTS: Multiple terms to describe the therapies, products, and disciplines often referred to as CAM, were considered. Even though participants generally agreed there is a lack of optimal definitions for popular CAM-related umbrella terms and that all terms that have so far been introduced are to some extent problematic, CAM and IHC remained the most popular and accepted terms by far. The names of the specific disciplines were also deemed adequate in certain contexts. Focus group participants clarified the context in which those three terms are appropriate. Existing and emergent definitions of both CAM and integrative healthcare terms were discussed. CONCLUSIONS: CAM and other related terms could be used more effectively, provided they are used in the proper context. It appears difficult for the time being to reach a consensus on the definition of the term CAM due to the uncertainty of the positioning of CAM in the contemporary healthcare systems. While umbrella terms such as CAM and IHC are useful in the context of research, policy making and education, relevant stakeholders should limit the use of those terms.

American College of Rheumatology 2012 recommendations for the use of nonpharmacologic and pharmacologic therapies in osteoarthritis of the hand, hip, and knee.

OBJECTIVE: To update the American College of Rheumatology (ACR) 2000 recommendations for hip and knee osteoarthritis (OA) and develop new recommendations for hand OA. METHODS: A list of pharmacologic and nonpharmacologic modalities commonly used to manage knee, hip, and hand OA as well as clinical scenarios representing patients with symptomatic hand, hip, and knee OA were generated. Systematic evidence-based literature reviews were conducted by a working group at the Institute of Population Health, University of Ottawa, and updated by ACR staff to include additions to bibliographic databases through December 31, 2010. The Grading of Recommendations Assessment, Development and Evaluation approach, a formal process to rate scientific evidence and to develop recommendations that are as evidence based as possible, was used by a Technical Expert Panel comprised of various stakeholders to formulate the recommendations for the use of nonpharmacologic and pharmacologic modalities for OA of the hand, hip, and knee. RESULTS: Both "strong" and "conditional" recommendations were made for OA management. Modalities conditionally recommended for the management of hand OA include instruction in joint protection techniques, provision of assistive devices, use of thermal modalities and trapeziometacarpal joint splints, and use of oral and topical nonsteroidal antiinflammatory drugs (NSAIDs), tramadol, and topical capsaicin. Nonpharmacologic modalities strongly recommended for the management of knee OA were aerobic, aquatic, and/or resistance exercises as well as weight loss for overweight patients. Nonpharmacologic modalities conditionally recommended for knee OA included medial wedge insoles for valgus knee OA, subtalar strapped lateral insoles for varus knee OA, medially directed patellar taping, manual therapy, walking aids, thermal agents, tai chi, self management programs, and psychosocial interventions. Pharmacologic modalities conditionally recommended for the initial management of patients with knee OA included acetaminophen, oral and topical NSAIDs, tramadol, and intraarticular corticosteroid injections; intraarticular hyaluronate injections, duloxetine, and opioids were conditionally recommended in patients who had an inadequate response to initial therapy. Opioid analgesics were strongly recommended in patients who were either not willing to undergo or had contraindications for total joint arthroplasty after having failed medical therapy. Recommendations for hip OA were similar to those for the management of knee OA. CONCLUSION: These recommendations are based on the consensus judgment of clinical experts from a wide range of disciplines, informed by available evidence, balancing the benefits and harms of both nonpharmacologic and pharmacologic modalities, and incorporating their preferences and values. It is hoped that these recommendations will be utilized by health care providers involved in the management of patients with OA.

The state of research on complementary and alternative medicine in pediatric rheumatology.

This article reviews available evidence on complementary and alternative medicine in pediatric rheumatology. Despite its common use in pediatric rheumatology (34%-92%), there is still uncertainty as to its efficacy and safety. Although results are promising for some treatments such as massage, acupuncture, mind-body interventions (eg, guided imagery and meditative breathing), and some natural health products (eg, calcium supplements and Tripterygium wilfordii), there is a need for high-quality trials investigating the long-term effects and underlying mechanisms of these therapies as well as research on their use in this population of patients.

Access and perceived need for physical and occupational therapy in chronic arthritis.

PURPOSE: Physical and occupational therapy are beneficial for persons with chronic arthritis; however, access is problematic. The goal was to examine issues related to access to these services for patients with chronic arthritis. METHODS: We used two data sources: 1) questionnaires sent to a random sample of 600 family physicians and to all 85 rheumatologists in the province of Quebec; and 2) interviews of 211 patients with physician-confirmed chronic arthritis recruited from 34 primary care settings in Quebec. RESULTS: Only 11.5% of family physicians and 31.7% of rheumatologists referred patients with rheumatoid arthritis (RA) to rehabilitation, whereas 60.4% of family doctors referred patients with osteoarthritis. Only 26.1% of patients felt that they required rehabilitation and this was associated with lower self-efficacy (OR: 0.84, 95% CI: 0.72, 0.99) and higher educational level (OR: 2.10, 95% CI: 1.01, 4.36). CONCLUSION: Family physicians are less likely to refer patients with RA to therapy. Only about a quarter of patients with chronic arthritis treated in primary care perceived the need for these services. Efforts to improve arthritis care should address education of physicians and patients regarding the benefits of rehabilitation and there should be efforts to increase therapy resources in order to enhance access.

Complementary and alternative health care use in young children with physical disabilities waiting for rehabilitation services in Canada.

PURPOSE: We wished to determine the frequency of complementary and alternative health care (CAHC) use in preschool aged children with physical disabilities (PD) waiting for public rehabilitation services in the province of Quebec (Canada), to evaluate its effectiveness from the parents' perspective and to explore factors associated with its utilisation. METHOD: Children with PD referred to rehabilitation centres from two Montreal hospitals were recruited. We evaluated the use of CAHC and its effectiveness from the parents' perspective in a cross-sectional manner, using descriptive statistics. We explored factors associated with utilisation, using logistic regression models. RESULTS: In this group of children with PD (n = 206, mean age: 2.6 years), 31 (15%) used CAHC and 15 (48.4%) of those tried more than one type. CAHC was considered at least moderately beneficial by parents in 53% of the cases. The use of CAHC was higher among children with low health-related quality of life (HRQOL) and children whose mothers were more educated and considered themselves as Canadian (p < 0.05). CONCLUSIONS: Although the use of CAHC by young children with PD was low, use of CAHC was higher among children with lower HRQOL and whose mothers were highly educated and Canadian. CAHC use should be evaluated by health providers to better educate parents of children with PD, which may help them to make the best decisions regarding their child's treatment while waiting for rehabilitation services.

Longitudinal analysis of complementary and alternative health care use in children with juvenile idiopathic arthritis.

OBJECTIVES: The aims were to determine the frequency of use of different types of complementary and alternative health care (CAHC) in children with juvenile idiopathic arthritis (JIA), to evaluate their effectiveness from the parents' point of view and to explore the factors associated with utilization and with continued use. METHODS: A cohort of children with JIA (n=182, mean age: 10 years) who attended out-patient clinics were followed for 1 year. Parents responded to questionnaires every 3 months. We used generalized estimating equations to analyze factors associated with CAHC use and polytomous regression to evaluate factors associated with continued use of CAHC. RESULTS: Use of CAHC ranged between 10% and 24% for the various 3-month intervals and 36.4% of participants used at least one type of CAHC over the 12-month period. Seventy-two percent of parents who used CAHC for their children felt that it was at least somewhat beneficial. Predictors of continued use of CAHC included previous use of CAHC by parents for their own health problems and lower perceived helpfulness of prescribed medications. Neither children's demographic and socioeconomic characteristics nor disease status were associated with CAHC use. CONCLUSIONS: CAHC use in children with JIA is common and considered to be moderately beneficial by most parents who used it. Lower parents' perceived helpfulness of medications and previous use of CAHC are associated with a longer use of CAHC by their child. These facts should be taken into account by health professionals involved in the care of these children.

Association between perceived treatment adherence and health-related quality of life in children with juvenile idiopathic arthritis: perspectives of both parents and children.

OBJECTIVE: The aim of the study was to examine the relationship between perceived treatment adherence and health-related quality of life (HRQOL) in children with arthritis, from both parent and child perspectives. METHODS: Patients and their parents, who attended the juvenile idiopathic arthritis (JIA) clinic at the Montreal Children's Hospital, completed the Juvenile Arthritis Quality of Life Questionnaire (JAQQ), and either the Child Adherence Report Questionnaire (CARQ) or the Parent Adherence Report Questionnaire (PARQ). Linear regression models examined the associations between perceived treatment adherence and HRQOL while adjusting for age, severity, duration of the disease, and complexity of the medical regimen. RESULTS: Perceived adherence to medications was associated with a better HRQOL total score from the children's perspective (beta = -0.02, 95% confidence interval [CI] = -0.03, -0.004), particularly with respect to gross motor (beta = -0.03, 95% CI = -0.05, -0.01) and psychosocial functions (beta = -0.03, 95% CI = -0.04, -0.01). According to parents, perceived adherence to exercises was associated with fewer symptoms (beta = -0.01, 95% CI = -0.03, 0.000) and better psychosocial functioning (beta = -0.01, 95% CI = -0.03, -0.002). CONCLUSION: Perceived adherence to medications is associated with an improved HRQOL according to children. According to parents, adherence to exercises may be associated with an improved HRQOL.

Comparison between children with juvenile idiopathic arthritis and their parents concerning perceived treatment adherence.

OBJECTIVE: Adherence to treatment in juvenile idiopathic arthritis (JIA) may be associated with better outcomes. Clinicians must be aware of possible divergence between parents and children regarding adherence, in order to gain a better understanding of adherence and factors associated with it. The objective was to determine the level of agreement between children with JIA and their parents concerning perception of the child's adherence to the treatment regimen (for both medications and exercises). METHODS: Fifty patients and their parents, who attended the JIA clinic at the Montreal Children's Hospital, completed the Child Adherence Report Questionnaire and the Parent Adherence Report Questionnaire. Paired t-tests were used to compare parents' and children's scores for adherence questions and agreements were analyzed by intraclass correlation coefficients (ICCs). RESULTS: Parents reported that their children showed more negative reactions to taking medication and doing exercises, more helpfulness from the medication, and more difficulty to carry out the exercise program than their children reported. ICCs (95% confidence interval) for medications and exercises were, respectively, 0.32 (0.04, 0.56) and 0.77 (0.61, 0.87) for overall adherence, 0.33 (0.05, 0.57) and 0.39 (0.09, 0.62) for perceived difficulty to following treatment, and 0.37 (0.09, 0.60) and 0.45 (0.17, 0.67) for how often children had negative reactions following treatment. Levels of agreement for perceived helpfulness of treatments were quite low. CONCLUSION: Agreement between parents and children concerning adherence was at best moderate, and generally better for the exercise program than for prescribed medications.

Comparison between Children with Juvenile Idiopathic Arthritis (JIA) and their parents concerning perceived Quality of Life.

The aim of the study was to determine the level of agreement between the perceptions of children with JIA and their parents concerning quality of life. Fifty patients aged 9-18 years and their parents, who attended the JIA clinic at the Montreal Children's Hospital, completed the Juvenile Arthritis Quality of Life Questionnaire (JAQQ). Paired t-tests were employed to compare parents' and children's scores and agreements were analyzed by intraclass correlation coefficients (ICCs). Linear regression was used to explore factors associated with agreements and with the perceptions of quality of life. ICCs (95% confidence interval) for the subscales of the JAQQ were 0.62 (0.42,0.77) for gross motor function, 0.35 (0.08,0.57) for fine motor function, 0.61 (0.41,0.76) for psychosocial function, 0.70 (0.52,0.82) for systemic symptoms and 0.60 (0.38,0.75) for pain. Agreement was higher for psychosocial function among younger children and for overall quality of life among those who had the disease longer. Higher agreement levels on pain were associated with more severe disease. Disease severity was associated with perceptions of quality of life (p < 0.01). There seems to be good agreement between the perceptions of children with JIA and their parents concerning quality of life, except for fine motor function.