22 research outputs found
Design of the muscles in motion study: a randomized controlled trial to evaluate the efficacy and feasibility of an individually tailored home-based exercise training program for children and adolescents with juvenile dermatomyositis
A unique, interactive and web-based pediatric rheumatology teaching module: residents’ perceptions
Abstract
Background
The limited availability of pediatric rheumatologists for teaching in pediatric residency programs negatively impacts resident education about rheumatology. At present, there are no educational websites available for trainees to learn about pediatric rheumatology. We are planning to develop an interactive web-based teaching module to improve resident learning about rheumatology (“POINTER”: Pediatric Online INteractive TEaching in Rheumatology). The aim of this study was to perform a needs assessment of pediatric residents who will be using POINTER.
Methods
Pediatric residents (n = 60) at The Hospital for Sick Children were emailed an online survey. This was designed to assess prior use of online teaching modules, the utility of an online teaching module for rheumatology and which technologies should be included on such a site.
Results
Forty-seven residents participated in the survey (78.3% response rate). Ninety-one percent of the respondents thought that an interactive teaching website would enhance their learning and should include case-based teaching modules. Several web-based technologies were felt to be important for inclusion on the teaching modules. These included graphics and animation (86.4%), interactivity (93.2%), pictures (100%), live digital videos (88.9%) and links to articles and research (88.6%).
Conclusions
An interactive web-based rheumatology teaching module would be well utilized by pediatric residents. Residents showed preference for case-based teaching modules as well as multimedia modalities for learning a detailed musculoskeletal examination
A unique, interactive and web-based pediatric rheumatology teaching module: residents’ perceptions
BACKGROUND: The limited availability of pediatric rheumatologists for teaching in pediatric residency programs negatively impacts resident education about rheumatology. At present, there are no educational websites available for trainees to learn about pediatric rheumatology. We are planning to develop an interactive web-based teaching module to improve resident learning about rheumatology (“POINTER”: Pediatric Online INteractive TEaching in Rheumatology). The aim of this study was to perform a needs assessment of pediatric residents who will be using POINTER. METHODS: Pediatric residents (n = 60) at The Hospital for Sick Children were emailed an online survey. This was designed to assess prior use of online teaching modules, the utility of an online teaching module for rheumatology and which technologies should be included on such a site. RESULTS: Forty-seven residents participated in the survey (78.3% response rate). Ninety-one percent of the respondents thought that an interactive teaching website would enhance their learning and should include case-based teaching modules. Several web-based technologies were felt to be important for inclusion on the teaching modules. These included graphics and animation (86.4%), interactivity (93.2%), pictures (100%), live digital videos (88.9%) and links to articles and research (88.6%). CONCLUSIONS: An interactive web-based rheumatology teaching module would be well utilized by pediatric residents. Residents showed preference for case-based teaching modules as well as multimedia modalities for learning a detailed musculoskeletal examination
Proposed core set of items for measuring disease activity in systemic juvenile idiopathic arthritis
Objective.To date, there are no standardized disease activity tools for systemic juvenile idiopathic arthritis (sJIA). We developed a core set of disease activity measures for sJIA.Methods.We conducted a validation study in patients with sJIA recruited from 3 Canadian institutions. Disease activity scores were based on questionnaires, clinical factors, and laboratory measures. The physician’s global assessment was our criterion standard. We determined the strength of association of each item with the criterion standard. We then surveyed international experts to determine the top 10 items. Finally, we used the experts’ responses to generate a proposed core set of disease activity measures.Results.We enrolled 57 subjects — 26 with moderately or severely active disease, and 31 with mildly active or inactive disease. Items that most strongly correlated with the criterion standard were number of active joints (r = 0.79), parent’s global assessment of disease activity (r = 0.53), erythrocyte sedimentation rate (ESR; r = 0.62), and C-reactive protein (CRP; r = 0.61). The response rate from international experts was 82% (154/187). Items with the most votes, in descending order, were number of active joints, number of days with fever in the preceding 2 weeks, patient’s and parent’s global assessments of disease activity, sJIA rash, ESR, CRP, and hemoglobin level.Conclusion.We propose a core set of items for measuring disease activity in sJIA. Future research should be aimed at further validation of this core set in the international context.</jats:sec
Intra-rater reliability of the bath ankylosing spondylitis disease activity index (BASDAI) and the bath ankylosing spondylitis functional index (BASFI) in children with spondyloarthritis
A Canadian evaluation framework for quality improvement in childhood arthritis: key performance indicators of the process of care
Background:
The evaluation of quality of care in juvenile idiopathic arthritis (JIA) is critical for advancing patient outcomes but is not currently part of routine care across all centers in Canada. The study objective is to review the current landscape of JIA quality measures and use expert panel consensus to define key performance indicators (KPIs) that are important and feasible to collect for routine monitoring in JIA care in Canada.
Methods:
Thirty-seven candidate KPIs identified from a systematic review were reviewed for inclusion by a working group including 3 pediatric rheumatologists. A shortlist of 14 KPIs was then assessed using a 3-round modified Delphi panel based on the RAND/UCLA Appropriateness Method. Ten panelists across Canada participated based on their expertise in JIA, quality measurement, or lived experience as a parent of a child with JIA. During rounds 1 and 3, panelists rated each KPI on a 1–9 Likert scale on themes of importance, feasibility, and priority. In round 2, panelists participated in a moderated in-person discussion that resulted in minor modifications to some KPIs. KPIs with median scores of ≥ 7 on all 3 questions without disagreement were included in the framework.
Results:
Ten KPIs met the criteria for inclusion after round 3. Five KPIs addressed patient assessments: pain, joint count, functional status, global assessment of disease activity, and the clinical Juvenile Arthritis Disease Activity Score (cJADAS). Three KPIs examined access to care: wait times for consultation, access to pediatric rheumatologists within 1 year of diagnosis, and frequency of clinical follow-up. Safety was addressed through KPIs on tuberculous screening and laboratory monitoring. KPIs examining functional status using the Childhood Health Assessment Questionnaire (CHAQ), quality of life, uveitis, and patient satisfaction were excluded due to concerns about feasibility of measurement.
Conclusions:
The proposed KPIs build upon existing KPIs and address important processes of care that should be measured to improve the quality of JIA care. The feasibility of capturing these measures will be tested in various data sources including the Understanding Childhood Arthritis Network (UCAN) studies. Subsequent work should focus on development of meaningful outcome KPIs to drive JIA quality improvement in Canada and beyond.Medicine, Faculty ofNon UBCMedicine, Department ofReviewedFacult
Consensus Approach to a Treat-to-target Strategy in Juvenile Idiopathic Arthritis Care: Report From the 2020 PR-COIN Consensus Conference.
OBJECTIVE: Treat to target (T2T) is a strategy of adjusting treatment until a target is reached. An international task force recommended T2T for juvenile idiopathic arthritis (JIA) treatment. Implementing T2T in a standard and reliable way in clinical practice requires agreement on critical elements of (1) target setting, (2) T2T strategy, (3) identifying barriers to implementation, and (4) patient eligibility. A consensus conference was held among Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) stakeholders to inform a statement of understanding regarding the PR-COIN approach to T2T.
METHODS: PR-COIN stakeholders including 16 healthcare providers and 4 parents were invited to form a voting panel. Using the nominal group technique, 2 rounds of voting were held to address the above 4 areas to select the top 10 responses by rank order.
RESULTS: Incorporation of patient goals ranked most important when setting a treatment target. Shared decision making (SDM), tracking measurable outcomes, and adjusting treatment to achieve goals were voted as the top elements of a T2T strategy. Workflow considerations, and provider buy-in were identified as key barriers to T2T implementation. Patients with JIA who had poor prognostic factors and were at risk for high disease burden were leading candidates for a T2T approach.
CONCLUSION: This consensus conference identified the importance of incorporating patient goals as part of target setting and of the influence of patient stakeholder involvement in drafting treatment recommendations. The network approach to T2T will be modified to address the above findings, including solicitation of patient goals, optimizing SDM, and better workflow integration