Update on the epidemiology, risk factors and disease outcomes of Juvenile idiopathic arthritis

Palman, Jason; Shoop-Worrall, Stephanie; Hyrich, Kimme L; McDonagh, Janet E.

doi:10.1016/j.berh.2018.10.004

Cited by 49 publications

(31 citation statements)

References 120 publications

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“…This is in line with a qualitative study by Bromberg et al that nds self-reported pain and fatigue are highly common in children with JIA despite advances in treatment strategies (17). It is also highlighted to be an important research area by Palman et al (18), along with de ning better predictors of remission states, which was also part of our Top 10. The fact that these studies all underline the same top research priority demonstrates the importance of future research focusing on this.…”

Section: Discussionsupporting

confidence: 86%

Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

Verwoerd

Armbrust

Cowan

et al. 2020

Preprint

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Background: Involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together with patients, their caregivers and healthcare professionals through conducting a nationwide survey among these stakeholders.Methods: The James Lind Alliance method was used, tailored with additional focus groups held to involve younger patients. First, research questions were gathered through an online and hardcopy survey. The received questions that were in scope were summarised and a literature search was performed to verify that questions were unanswered. Questions were ranked in the interim survey, and the final top 10 was chosen during a prioritisation workshop.Results: Two hundred and seventy-eight respondents submitted 604 questions, of which 519 were in scope. Of these 604 questions, 81 were generated in the focus groups with younger children. The questions were summarised into 53 summary questions. An evidence checking process verified that all questions were unanswered. A total of 303 respondents prioritised the questions in the interim survey. Focus groups with children generated a top 5 of their most important questions. Combining this top 5 with the top 10 s of patients, carers, and clinicians led to a top 21. Out of these, the top 10 research priorities were chosen during a final workshop. Research into pain and fatigue, personalised treatment strategies and aetiology were ranked high in the Top 10.Conclusions: Through this study, the top 10 research priorities for JIA of patients, their caregivers and clinicians were identified to inform researchers and research funders of the research topics that matter most to them. The top priority involves the treatment and mechanisms behind persisting pain and fatigue when the disease is in remission.

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Section: Discussionsupporting

confidence: 86%

Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

Verwoerd

Armbrust

Cowan

et al. 2020

Preprint

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“…Several other inflammatory entities -such as multiple sclerosis (MS), and juvenile idiopathic arthritis (JIA)- have specific courses of the disease, with distinctive clinical presentations associated with different anatomic and functional prognoses related to the degree of tissue damage. In such cases, an appropriate classification of the presenting phenotype guides the disease management [ 37 , 38 ]. Therefore, herein we propose that, somehow, VKH disease has significant differences when first seen in the initial-onset acute or in the chronic recurrent stages.…”

Section: Implications For Clinical Practicementioning

confidence: 99%

Initial-onset acute and chronic recurrent stages are two distinctive courses of Vogt-Koyanagi-Harada disease

Urzua

Herbort

Valenzuela

et al. 2020

J Ophthal Inflamm Infect

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Purpose To describe distinctive stages of Vogt-Koyanagi-Harada (VKH) disease: initial-onset acute versus chronic recurrent disease. Methods A comprehensive literature review regarding stages and clinical presentations of VKH disease was conducted. Results Despite a list of signs that has been described as characteristic features of early or late phases of VKH disease, the current classification -developed by an international committee and published in 2001- does not consider a distinction regarding the time from onset of disease symptoms, and specific findings observed at certain time point from the symptoms presentation and outcomes related to the stage of VKH disease. In that sense, chronic recurrent VKH disease is more refractory to treatment and is associated with a higher rate of complications. Accordingly, this subset of VKH patients has poorer functional and anatomical outcomes than patients with an initial-onset acute disease. Conclusions An early clear distinction of VKH phenotype [Initial-onset acute versus chronic recurrent disease] should be considered in each clinical scenario, evaluating the delay in diagnosis and the clinical presentation, since it may help clinicians to perform a correct disease prognosis categorization and thus to make treatment decisions in terms of potential refractoriness or expected clinical outcomes.

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“…Measuring the outcomes that matter to CYP and their families (for example persistent symptoms, medication side-effects, function and quality of life), either in the context of clinical research or quality improvement exercises, is a necessary precursor to patient-centred improvements in the quality of clinical care and service delivery. Patient-reported outcomes present particular challenges in the paediatric setting and, where possible, must be designed to collect reports from both the child/young person and the parent [18]. One way to measure the outcomes that matter is to use well-designed and validated patientreported outcome measures (PROM) and patientreported experience measures (PREM).…”

Section: Introductionmentioning

confidence: 99%

Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs)

et al. 2020

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Background Measuring the outcomes that matter to children and young people (CYP) with juvenile idiopathic arthritis (JIA), is a necessary precursor to patient-centred improvements in quality of clinical care. We present a two-centre validation of novel JIA patient-reported outcome and experience measures (PROM and PREM) developed as part of the CAPTURE-JIA project. Methods CYP with JIA were recruited from paediatric rheumatology clinics, completing the CAPTURE-JIA PROM and PREM, CHAQ and CHU 9D. A subset participated in face-to-face interviews and completed the PROM/PREM 1 week later. The OMERACT filter was applied and the three domains of validation assessed. Truth assessments included cognitive interviewing, sensitivity analysis and Spearman’s correlations. Discrimination assessments included specificity and reliability testing. Feasibility was assessed using time to form completion and proportion of missing data. Results Eighty-two CYP and their families were recruited; ten cognitive interviews and fifteen PROM/PREM test/retests were conducted. Truth: CYP and parents understood the PROM/PREM and felt important areas were covered. PROM criteria had high sensitivities (> 70%) against similar items on the CHU 9D, with the exception of fatigue (58%). Correlations between similar PROM and CHU 9D criteria were moderate to very strong (coefficients 0.40–0.82.) Discrimination: high specificities (> 70%) on corresponding PROM and CHU 9D domains. Feasibility: median completion times for PROM 60 s (IQR 38–75) and PREM 49 s (IQR 30–60) respectively. Conclusion The CAPTURE-JIA PROM and PREM are valid and feasible in UK paediatric rheumatology clinics. Embedding routine collection into clinical care would be a major step towards improving quality of care.

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Update on the epidemiology, risk factors and disease outcomes of Juvenile idiopathic arthritis

Cited by 49 publications

References 120 publications

Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

Initial-onset acute and chronic recurrent stages are two distinctive courses of Vogt-Koyanagi-Harada disease

Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs)

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