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BACKGROUND: The objectives of this longitudinal study were to understand how comorbid rheumatic disease and depression symptoms were associated with at-work productivity among young adults, and to examine whether workplace support modified this association. METHODS: Seventy-six Canadian young adults who were employed and living with a rheumatic disease were surveyed three times over 27 months. Morbidity was defined by whether participants reported severe rheumatic disease symptoms and/or depressive symptoms. Participants were asked about presenteeism, absenteeism, and whether the workplace support needs (accommodation and benefit availability and use) were met. Generalized estimating equations were used to address study objectives. RESULTS: Seventeen participants experienced neither severe rheumatic disease nor depressive symptoms (no morbidity), 42 participants experienced either severe rheumatic disease or depressive symptoms (single morbidity), and 17 participants reported comorbidity at baseline. Participants with comorbidity reported greater presenteeism scores and were most likely to report absenteeism, compared to the other two morbidity levels. Having workplace support needs met was associated with decreased presenteeism over the 27-month period among participants with no and a single morbidity. Conversely, unmet support need was associated with greater presenteeism for participants with comorbidity. Having workplace support needs met did not modify the association between morbidity and absenteeism. CONCLUSION: Comorbid rheumatic disease and depression burden reduce productivity among young adults. A supportive work environment has the potential to address at-work productivity challenges. Additional research is needed to understand how workplace supports coupled with clinical interventions may tackle challenges at work for young adults living with rheumatic disease and depression.
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OBJECTIVE: Adult-onset Still's disease (AOSD) and secondary hemophagocytic lymphohistiocytosis (sHLH) are both hyperferritinemic cytokine storm syndromes that can be difficult to distinguish from each other in hospitalized patients. The objective of this study was to compare the inflammatory markers ferritin, D-dimer, C-reactive protein (CRP), and soluble CD25 (sCD25) in patients with AOSD and sHLH. These four markers were chosen as they are widely available and represent different aspects of inflammatory diseases: macrophage activation (ferritin); endothelialopathy (D-dimer); interleukin-1/interleukin-6/tumour necrosis factor elevation (CRP) and T cell activation (sCD25). METHODS: This was a single-center retrospective study. Patients diagnosed by the Hematology service at Vancouver General Hospital for AOSD or sHLH from 2009 to 2023 were included. RESULTS: There were 16 AOSD and 44 sHLH patients identified. Ferritin was lower in AOSD than HLH (median 11 360 µg/L vs. 29 020 µg/L, p = .01) while D-dimer was not significantly different (median 5310 mg/L FEU vs. 7000 mg/L FEU, p = .3). CRP was higher (median 168 mg/L vs. 71 mg/L, p <.01) and sCD25 was lower (median 2220 vs. 7280 U/mL, p = .004) in AOSD compared to HLH. The combined ROC curve using CRP >130 mg/L and sCD25< 3900 U/mL to distinguish AOSD from HLH had an area under the curve (AUC) of 0.94 (95% confidence interval 0.93-0.97) with sensitivity 91% and specificity 93%. CONCLUSIONS: These findings suggest that simple, widely available laboratory tests such as CRP and sCD25 can help clinicians distinguish AOSD from HLH in acutely ill adults with extreme hyperferritinemia. Larger studies examining a wider range of clinically available inflammatory biomarkers in a more diverse set of cytokine storm syndromes are warranted.
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OBJECTIVE: Using Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) juvenile idiopathic arthritis (JIA) registry data, we describe (1) clinical characteristics of patients with JIA transitioning to adult care, (2) prevalence of disease-related damage and complications, and (3) changes in disease activity during the final year prior to transfer. METHODS: Registry participants who turned 17 years between February 2017 and November 2021 were included. Clinical characteristics and patient-reported outcomes (PROs) at the last recorded pediatric rheumatology visit, and changes observed in the year prior to that visit were analyzed. Physicians completed an additional questionnaire characterizing cumulative disease-related damage and adverse events by age 17 years. RESULTS: At their last visit, 88 of 131 participants (67%) had inactive and 42 (32%) had active disease. Overall, 96 (73%) were on medications and 41 (31%) were on biologic disease-modifying antirheumatic drugs. Among 80 participants for whom the additional questionnaire was completed, 26% had clinically detected joint damage, 31% had joint damage on imaging, 14% had uveitis, and 7.5% had experienced at least 1 serious adverse event. During the final year, 44.2% of patients were in remission, 28.4% attained inactive disease, and 27.4% became or remained active. Mean scores of PROs were stable overall during that last year, but a minority reported marked worsening. CONCLUSION: A substantial proportion of youth with JIA transitioning to adult care in Canada had a high disease burden, which was reflected by their degree of disease activity, joint damage, or ongoing medication use. These results will inform pediatric and adult providers of anticipated needs during transition of care.
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Antirreumáticos , Artritis Juvenil , Reumatología , Adulto , Humanos , Adolescente , Niño , Artritis Juvenil/tratamiento farmacológico , Canadá , Antirreumáticos/uso terapéutico , Sistema de RegistrosRESUMEN
OBJECTIVE: Young adults living with episodic disabilities face unpredictable disruptions to their employment and health. Our study aimed to examine the impact of employment and income support interventions on the health and well-being of young adults living with episodic disabilities. METHODS: We conducted a systematic review of peer-reviewed intervention studies published in 2001-2021 in industrialized contexts. Two independent reviewers screened titles, abstracts and full-texts. We undertook a narrative synthesis of eligible articles. RESULTS: Our search yielded 15 269 published articles, of which only five studies were eligible for evidence synthesis. All articles were appraised as being of medium quality. Four interventions focused on young adults living with mental health conditions. Two were based in clinical settings; three were based in community-based settings. Each employment intervention exhibited improvements in health outcomes. Three studies examined the impact of supported employment interventions that were particularly beneficial to improving work and health outcomes. CONCLUSION: Involvement in employment interventions could provide benefits for the health of young adults living with episodic disabilities. Our systematic review highlights the need for research to elaborate on the ways in which employment interventions can impact the health and well-being of young adults living with different episodic disabilities.
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Personas con Discapacidad , Empleos Subvencionados , Trastornos Mentales , Humanos , Adulto JovenRESUMEN
BACKGROUND: To identify baseline predictors of persisting pain in children with Juvenile Idiopathic Arthritis (JIA), relative to patients with JIA who had similar baseline levels of pain but in whom the pain did not persist. METHODS: We used data from the Research in Arthritis in Canadian Children emphasizing Outcomes (ReACCh-Out) inception cohort to compare cases of 'moderate persisting pain' with controls of 'moderate decreasing pain'. Moderate pain was defined as a Visual Analogue Scale (VAS) for pain measurement score of > 3.5 cm. Follow-up was minimum 3 years. Univariate and Multivariate logistic regression models ascertained baseline predictors of persisting pain. RESULTS: A total of 31 cases and 118 controls were included. Mean pain scores at baseline were 6.4 (SD 1.6) for cases and 5.9 (1.5) for controls. A greater proportion of cases than controls were females (77.4% vs 65.0%) with rheumatoid factor positive polyarthritis (12.9% vs 4.2%) or undifferentiated JIA (22.6% vs 8.5%). Oligoarthritis was less frequent in cases than controls (9.7% vs 33%). At baseline, cases had more active joints (mean of 11.4 vs 7.7) and more sites of enthesitis (4.6 vs 0.7) than controls. In the final multivariate regression model, enthesitis count at baseline (OR 1.40, CI 95% 1.19-1.76), female sex (4.14, 1.33-16.83), and the overall Quality of My Life (QoML) baseline score (0.82, 0.69-0.98) predicted development of persisting pain. CONCLUSIONS: Among newly diagnosed children with JIA with moderate pain, female sex, lower overall quality of life, and higher enthesitis counts at baseline predicted development of persisting pain. If our findings are confirmed, patients with these characteristics may be candidates for interventions to prevent development of chronic pain.
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Artritis Juvenil , Dolor Crónico , Entesopatía , Humanos , Niño , Femenino , Masculino , Artritis Juvenil/complicaciones , Artritis Juvenil/epidemiología , Estudios de Casos y Controles , Calidad de Vida , Canadá/epidemiología , Dolor Crónico/epidemiología , Dolor Crónico/etiologíaRESUMEN
OBJECTIVE: Prospective comparative effectiveness research (CER) in chronic nonbacterial osteomyelitis (CNO) is lacking. Our objectives were to (1) determine the use and safety of each consensus treatment plan (CTP) regimen for CNO, (2) assess the feasibility of using the Chronic Nonbacterial Osteomyelitis International Registry (CHOIR) data for CER, and (3) develop and validate a CNO clinical disease activity score (CDAS) using CHOIR. METHODS: Consenting children or young adults with CNO were enrolled into CHOIR. Demographic, clinical, and imaging data were prospectively collected. The CNO CDAS was developed through a Delphi survey and nominal group technique. External validation surveys were administered to CHOIR participants. RESULTS: One hundred forty (78.2%) CHOIR participants enrolled between August 2018 and September 2020 received at least 1 CTP regimen. Baseline characteristics from different CTP groups were well matched. Patient pain, patient global assessment, and clinical CNO lesion count were key variables included in the CNO CDAS. The CDAS showed a strong correlation with patient/parent report of difficulty using a limb, back, or jaw and patient/parent report of disease severity, but a weak correlation with patient/parent report of fatigue, sadness, and worry. The change in CDAS was significant in patients reporting disease worsening or improvement (P < 0.001). The CDAS significantly decreased after initiating second-line treatments from median 12.0 (IQR 8.0-15.5) to 5.0 (IQR 3.0-12.0; P = 0.002). Although second-line treatments were well tolerated, psoriasis was the most common adverse event. CONCLUSION: The CNO CDAS was developed and validated for disease monitoring and assessment of treatment effectiveness. CHOIR provided a comprehensive framework for future CER.
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Investigación sobre la Eficacia Comparativa , Osteomielitis , Niño , Adulto Joven , Humanos , Estudios de Factibilidad , Estudios Prospectivos , Osteomielitis/tratamiento farmacológico , Osteomielitis/patología , Enfermedad CrónicaRESUMEN
OBJECTIVES: To (i) validate the JIA parent global assessment (parent global) as a health-related quality of life (HRQoL) instrument; (ii) evaluate measurement properties of accepted HRQoL measures relative to those of the parent global; and (iii) assess causal pathways determining parent global scores. METHODS: Data from the Research in Arthritis in Canadian Children emphasizing outcomes (ReACCh-Out) cohort were used. Measurement properties were assessed in 344 patients at enrolment and 6 months later. Causal pathways were tested by structural equation modelling to understand root causes and mediators leading to parent global scores. RESULTS: Construct validity was supported by Spearman correlations of 0.53-0.70 for the parent global with the Juvenile Arthritis Quality of Life Questionnaire, Quality of My Life health scale (HRQoML), Pediatric Quality of Life Inventory (PedsQL)-Parent, and Child Health Questionnaire (CHQ)-Physical. Exceptions were PedsQL-Child (0.44) and CHQ-Psychosocial (0.31). Correlations were lower (0.14-0.49) with disease activity measures (physician global assessment of disease activity, active joint count, ESR). Responsiveness of the parent global to improvement according to parent ratings (0.51) was acceptable and within the range (0.32-0.71) of that of other measures. Reliability estimates and measurement errors for all measures were unsatisfactory, likely due to the prolonged time between assessments. Causal pathways for the parent global matched those previously reported for HRQoML. CONCLUSIONS: Our results offer support for the parent global as a valid measure of HRQoL for JIA. If confirmed, existing studies using the parent global may be re-interpreted, enhancing our knowledge of HRQoL in children with JIA.
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Artritis Juvenil , Calidad de Vida , Humanos , Calidad de Vida/psicología , Artritis Juvenil/diagnóstico , Artritis Juvenil/psicología , Estado de Salud , Reproducibilidad de los Resultados , Canadá , Padres , Evaluación de la Discapacidad , PsicometríaRESUMEN
OBJECTIVE: Workplace and labor market conditions are associated with the health of the working population. A longitudinal study was conducted among young adults with rheumatic disease to examine workplace activity limitations and job insecurity and their relationship with disease symptom trajectories. METHODS: Three online surveys were administered to young adults with rheumatic disease over 27 months. Self-reported data on pain, fatigue, and disease activity were collected. Workplace activity limitations and job insecurity were measured. Group-based discrete mixture models determined pain, fatigue, and disease activity trajectory groups. Robust Poisson regression models were fitted to examine the relationship among workplace activity limitations, job insecurity, and trajectory group membership. RESULTS: In total, 124 participants (mean ± SD age 29 ± 4.5 years) with rheumatic disease were recruited. At baseline, participants reported considerable workplace activity limitations (10.35 ± 5.8), and 36% of participants indicated experiencing job insecurity. We identified 2 latent rheumatic disease symptom trajectory groups. The first group had high persistent pain, fatigue, or disease activity; the second group had low persistent disease symptoms over time. Greater workplace activity limitations were associated with an increased relative risk (RR) of being in the high persistent severe pain (RR 1.02 [95% confidence interval (95% CI) 1.01, 1.03]), fatigue (RR 1.02 [95% CI 1.01, 1.03]), and disease activity trajectory groups (RR 1.02 [95% CI 1.01, 1.03]). Job insecurity was associated with an increased RR of membership in the high persistent pain (RR 1.14 [95% CI 1.04, 1.25]) and disease activity trajectory groups (RR 1.11 [95% CI 1.00, 1.22]). CONCLUSION: Workplace activity limitations and job insecurity represent working conditions that are associated with the health of young adults with rheumatic disease and should be examined as potential targets for intervention.
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Enfermedades Reumáticas , Lugar de Trabajo , Adulto Joven , Humanos , Adulto , Estudios Longitudinales , Fatiga/diagnóstico , Fatiga/epidemiología , Fatiga/etiología , Enfermedades Reumáticas/diagnóstico , Enfermedades Reumáticas/epidemiología , DolorRESUMEN
OBJECTIVE: To identify differences between baseline Canadian JIA practices and the 2019 ACR guidelines for JIA. METHODS: Canadian paediatric rheumatologists were surveyed for their opinions on reasonable a priori target adherence rates for JIA guideline recommendations. Prospectively collected data for 266 newly diagnosed children from 2017 to 2019 were analysed to calculate observed adherence rates. Kaplan-Meier survival curves were used to estimate the cumulative incidence of starting synthetic or biologic DMARDs (sDMARD or bDMARD, respectively) for different patient groups. RESULTS: A total of 25/61 (41%) eligible physicians answered the survey. Most survey respondents (64%) felt that adherence targets should vary depending on the strength of the recommendation and quality of evidence, from a mean of 84% for strong recommendations with high-quality evidence to 29% for conditional recommendations with very low-quality evidence. Data showed 13/19 (68%) recommendations would have met proposed targets and 10/19 (53%) had ≥80% observed adherence. Exceptions were the use of subcutaneous vs oral MTX (53%) and infrequent treatment escalation from NSAIDs to bDMARDs in patients with sacroiliitis (31%) or enthesitis (0%). By 12 weeks, 95% of patients with polyarthritis received sDMARDs, 38% of patients with systemic JIA received bDMARDs and 22% of patients with sacroiliitis received bDMARDs. CONCLUSION: Canadian paediatric rheumatology practices were in line with many 2019 JIA guideline recommendations before their publication, except for frequent use of oral MTX and infrequent direct escalation from NSAIDs to bDMARDs in sacroiliitis and enthesitis.
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Antirreumáticos , Artritis Juvenil , Entesopatía , Reumatología , Sacroileítis , Niño , Humanos , Artritis Juvenil/diagnóstico , Canadá , Antirreumáticos/uso terapéutico , Antiinflamatorios no Esteroideos/uso terapéutico , Sistema de Registros , Entesopatía/tratamiento farmacológico , Metotrexato/uso terapéutico , Resultado del TratamientoRESUMEN
Purpose : The world of work is changing and creating challenges and opportunities for the employment inclusion of young people with disabilities. In this article, the perceptions held by young adults with disabilities regarding participation in the future of work are examined. Design/methodology/approach : One-on-one interviews were conducted with Canadian young adults (ages 18-36 years) living with a disability. Participants were asked about their thoughts regarding the impact of the changing nature of work on their labor market involvement and career aspirations. A thematic analysis was performed to identify and examine emergent salient themes. Findings : In total, 22 young adults were interviewed; over half held secure employment. Career aspirations and work-related decisions were primarily shaped by a participant's health needs. The future of work was seen as a more proximal determinant to employment. Digital technologies were expected to impact working conditions and create barriers and facilitators to employment. Participants who indicated being securely employed held positive expectations regarding the impact of digital technology on their work. Participants working precariously held negative appraisals regarding the impact of digital technologies on employment opportunities. The role of technological and soft skills was critical to participating in a labor market reliant on advanced technology. Participants reported barriers to developing job skills related to their disability and their work arrangements. Originality/value : This research highlights the importance of considering changes in the future of work, especially the digital transformation of the economy, in the design of initiatives which promote the employment inclusion of young adults with disabilities. Despite the significance of the changing nature of work, supporting health needs and encouraging access to secure work arrangements also remain paramount.
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Personas Transgénero , Humanos , Objetivos , Identidad de Género , Personal de Salud , EscrituraRESUMEN
Background: Multisystem Inflammatory Syndrome in Children (MIS-C) is a post-infectious complication of SARS-CoV-2 infection with overlapping features of Kawasaki disease and toxic shock syndrome. In May 2020, a provincial multidisciplinary working group was established in anticipation of emerging cases following the first wave of SARS-CoV-2 infections. Methodology: Our centre established a multidisciplinary working group for MIS-C cases in British Columbia. The group developed guidelines using the World Health Organization MIS-C case definition. Guidelines were updated using quality improvement methods as new reports and our local experience evolved. We included all children who were evaluated in person or had samples sent to our centre for MIS-C evaluation from May 2020 to April 2021. We prospectively collected patient demographics, clinical and laboratory characteristics, and treatment. Results: Fifty-two children were included. Eleven were diagnosed as confirmed MIS-C. Ten of the 11 MIS-C cases presented with shock. Gastrointestinal and mucocutaneous involvement were also prominent. Common laboratory features included elevated C-reactive protein, D-dimer, troponin, and brain natriuretic peptide. Four out of 11 (36%) had myocardial dysfunction and 3/11 (27%) had coronary artery abnormalities. All 11 patients had evidence of SARS-CoV-2 infection. Ten out of 11 (91%) received intravenous (IV) immunoglobulin and IV corticosteroids. Conclusion: Our provincial cohort of MIS-C patients were more likely to present with shock and cardiac dysfunction, require ICU admission, and be treated with corticosteroids compared to ruled out cases. Our working group's evolving process ensured children with features of MIS-C were rapidly identified, had standardized evaluation, and received appropriate treatment in our province.
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OBJECTIVE: The aim of this study was to develop and validate a brief disability screen for children with JIA, the Kids Disability Screen (KDS). METHODS: A total of 216 children enrolled in the Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) Registry in 2017-2018 formed a development cohort, and 220 children enrolled in 2019-2020 formed a validation cohort. At every clinic visit, parents answered two questions derived from the Childhood Health Assessment Questionnaire (CHAQ): 'Is it hard for your child to run and play BECAUSE OF ARTHRITIS?' ('Hard' 0-10), and 'Does your child usually need help from you or another person BECAUSE OF ARTHRITIS?' ('Help', 0-10). We used 36-fold cross-validation and tested nine different mathematical methods to combine the answers and optimize psychometric properties. The results were confirmed in the validation cohort. RESULTS: Expressed as the mean of the two answers, KDS best balanced ease of use and psychometric properties, while a LASSO regression model combining the two answers with other patient characteristics [estimated CHAQ [eCHAQ]) had the highest responsiveness. In the validation cohort, 22.7%, 25.9% and 28.6% of patients had a score of 0 at enrolment for the KDS, eCHAQ and CHAQ, respectively. Responsiveness was 0.67, 0.74 and 0.62, respectively. Sensitivity to detect a CHAQ > 0 was 0.90 and specificity 0.56, KDS detecting some disability in 44% of children with a CHAQ = 0. CONCLUSION: This simple KDS has psychometric properties comparable with those of a full CHAQ and may be used at every clinic visit to identify those children who need a full disability assessment.
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Artritis Juvenil , Reumatología , Niño , Humanos , Artritis Juvenil/diagnóstico , Encuestas y Cuestionarios , Canadá , Evaluación de la Discapacidad , Psicometría , Sistema de Registros , Estado de Salud , Calidad de Vida , Reproducibilidad de los Resultados , Comparación TransculturalRESUMEN
OBJECTIVE: The aim of the Paediatric Rheumatology International Trials Organisation (PRINTO) juvenile idiopathic arthritis (JIA) classification criteria, which is still in development, is to identify homogeneous groups of JIA patients. This study was undertaken to compare International League of Associations for Rheumatology (ILAR) JIA classification criteria and PRINTO JIA classification criteria using data from the ReACCh-Out (Research in Arthritis in Canadian Children, Emphasizing Outcomes) cohort. METHODS: We used clinicobiologic data recorded within 7 months of diagnosis to assign a diagnosis of JIA and identify subcategories of JIA among 1,228 patients according to the 2 JIA classification systems. We compared the proportions of patients classified and the alignment of classification categories with clinicobiologic subtypes and adult arthritis types. RESULTS: The PRINTO criteria classified 244 patients (19.9%) as having early-onset antinuclear antibody-positive JIA, 157 (12.8%) as having enthesitis/spondylitis-related JIA, 38 (3.1%) as having systemic JIA, and 10 (0.8%) as having rheumatoid factor-positive JIA. A total of 12% of patients were unclassifiable using the ILAR criteria, while 63.3% were unclassifiable using the PRINTO criteria (777 with other JIA and 2 with unclassified JIA). In sensitivity analyses, >50% of patients remained unclassifiable using the PRINTO criteria. Compared to the PRINTO criteria, ILAR JIA categories aligned better with clinicobiologic subtypes in 131 patients (χ2 = 44, P = 0.005, versus χ2 = 15, P = 0.07 for PRINTO), and ILAR categories aligned better with adult types of arthritis in 389 evaluable patients. CONCLUSION: Currently identified PRINTO disorders can only be used to classify a minority of JIA patients, leaving a large proportion of JIA patients with other disorders requiring further characterization. Current PRINTO JIA classification criteria do not align better with clinicobiologic subtypes or adult forms of arthritis compared with the older ILAR classification system.
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Artritis Juvenil , Reumatología , Adulto , Artritis Juvenil/diagnóstico , Canadá , Niño , Estudios de Cohortes , Humanos , Factor ReumatoideRESUMEN
BACKGROUND: Cyclooxygenase (COX) enzymes oxidise arachidonic acid to prostaglandins, which modulate neuronal function and inflammation in the central nervous system. Consensus guidelines suggest non-steroidal anti-inflammatory drugs as a possible adjunctive approach in adults with obsessive-compulsive disorder (OCD) and in children with acute-onset OCD subtypes. However, there is limited evidence to support this approach. The primary objective of this study is to determine the efficacy of the COX-2-selective inhibitor celecoxib as an adjunct to treatment-as-usual in children and youth with moderate-to-severe OCD. The safety of this intervention including adverse events will also be systematically assessed. METHODS: The Adjunctive CElecoxib in childhood-onset OCD (ACE-OCD) study is a single-centre randomised, quadruple-blind, placebo-controlled superiority trial with two parallel groups: celecoxib 100 mg twice daily and placebo. Treatments will be added to participants' routine clinical care, which will not change over the course of the study. Target recruitment is 80 participants ages 7-18 with no recent treatment changes. The primary outcome is OCD severity after 12 weeks of treatment, measured by clinician-administered Children's Yale-Brown Obsessive Compulsive Scale (CY-BOCS). Secondary outcomes include CY-BOCS score after 6 weeks; difference in the proportion of participants achieving a clinically meaningful response or remission; mean clinical global impression of severity and improvement after 6 and 12 weeks; and proportion of participants reporting adverse events possibly or probably related to the study intervention. The primary analyses, carried out according to intention-to-treat principles, will compare the celecoxib to placebo group on each outcome of interest, adjusting for baseline scores using analysis of covariance or logistic regression. Participants will be offered a 12-week open-label celecoxib extension and will be invited to participate in an ancillary study for biomarker analyses. ETHICS AND DISSEMINATION: This protocol has been approved by the University of British Columbia Children's and Women's Research Ethics Board and has received a No Objection Letter from Health Canada. The findings will be disseminated in peer-reviewed journals and presentations to multiple stakeholders including patients, parents and healthcare providers. TRIAL REGISTRATION NUMBER: NCT04673578.
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Trastorno Obsesivo Compulsivo , Adolescente , Adulto , Canadá , Celecoxib/uso terapéutico , Niño , Ensayos Clínicos Fase II como Asunto , Inhibidores de la Ciclooxigenasa 2/efectos adversos , Método Doble Ciego , Femenino , Humanos , Trastorno Obsesivo Compulsivo/tratamiento farmacológico , Ensayos Clínicos Controlados Aleatorios como Asunto , Resultado del TratamientoRESUMEN
OBJECTIVE: Young adults with rheumatic disease face challenges communicating health needs, accessing workplace support, and sustaining productivity. Our objective was to examine whether disclosure modifies the relationship between workplace support and presenteeism. METHODS: An online survey was administered to Canadian young adults with rheumatic disease and asked about presenteeism (0 = health had no effect on work; 10 = health completely prevented working), workplace support need, availability, and use and whether health details were disclosed to an immediate supervisor. A multivariable robust linear regression model was conducted and stratified by those who did and did not disclose the details of their health to their supervisor. RESULTS: A total of 306 participants completed the survey with a mean ± SD presenteeism score of 4.89 ± 2.65. More than 70% disclosed health details to their supervisor; those who disclosed reported greater presenteeism (mean ± SD 5.2 ± 2.5) when compared to those who did not disclose (mean ± SD 4.2 ± 2.61). Greater disease severity was associated with disclosure. Half of the participants reported unmet workplace support needs (53%), 32% reported that their workplace support needs were met, and 15% reported exceeded workplace support needs. The relationship between presenteeism and workplace support needs was modified by disclosure. For participants who disclosed, workplace support needs that were unmet (ß = 1.59 [95% confidence interval (95% CI) 0.75, 2.43]) and that were met (ß = 1.25 [95% CI 0.39, 2.11]) were associated with greater presenteeism when compared to those with exceeded workplace support needs. CONCLUSION: To address presenteeism, strategies should be developed for young adults with rheumatic disease to foster access to available workplace supports and to navigate disclosure decisions.
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Presentismo , Enfermedades Reumáticas , Absentismo , Canadá , Estudios Transversales , Revelación , Humanos , Encuestas y Cuestionarios , Lugar de Trabajo , Adulto JovenRESUMEN
OBJECTIVE: To examine the Canadian pediatric rheumatology workforce and care processes. METHODS: Pediatric rheumatologists and allied health professionals (AHPs) participated. A designee from each academic center provided workforce information including the number of providers, total and breakdown of full-time equivalents (FTEs), and triage processes. We calculated the clinical FTE (cFTE) available per 75,000 (recommended benchmark) and 300,000 (adjusted) children using 2019 census data. The national workforce deficit was calculated as the difference between current and expected cFTEs. Remaining respondents were asked about ambulatory practices. RESULTS: The response rate of survey A (workforce information) and survey B (ambulatory practice information) was 100% and 54%, respectively. The majority of rheumatologists (91%) practiced in academic centers. The median number of rheumatologists per center was 3 (IQR 3) and median cFTE was 1.9 (IQR 1.5). The median cFTE per 75,000 was 0.2 (IQR 0.3), with a national deficit of 80 cFTEs. With the adjusted benchmark, there was no national deficit, but there was a regional maldistribution of rheumatologists. All centers engaged in multidisciplinary practices with a median of 4 different AHPs, although the median FTE for AHPs was ≤ 1. Most centers (87%) utilized a centralized triage process. Of 9 (60%) centers that used an electronic triage process, 6 were able to calculate wait times. Most clinicians integrated quality improvement practices, such as previsit planning (67%), postvisit planning (68%), and periodic health outcome monitoring (36-59%). CONCLUSION: This study confirms a national deficit at the current recommended benchmark. Most rheumatologists work in multidisciplinary teams, but AHP support may be inadequate.
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Reumatología , Canadá , Niño , Humanos , Reumatólogos , Encuestas y Cuestionarios , Recursos HumanosRESUMEN
OBJECTIVE: To describe the frequency and severity of parent-reported medication side effects (SEs) in children with juvenile idiopathic arthritis (JIA) relative to physician-reported actionable adverse events (AEs), and to assess their impact on health-related quality of life (HRQoL). METHODS: Newly diagnosed JIA patients recruited between 2017 and 2019 to the Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) Registry were included. Parents reported presence and severity (0 = no problem, 10 = very severe) of medication SEs at every clinic visit. Physicians were asked to report any actionable AE. HRQoL was assessed using the Quality of My Life (QoML) questionnaire (0 = the worst, 10 = the best) and parent's global assessment (0 = very well, 10 = very poor). Analyses included proportion of visits with SEs or actionable AEs, cumulative incidence by Kaplan-Meier methods, and HRQoL impact measured with longitudinal mixed-effects models. RESULTS: SEs were reported at 371 of 884 (42%) visits (95% confidence interval [95% CI] 39, 45%) in 249 patients, with a median of 2 SEs per visit (interquartile range [IQR] 1-3), and median severity of 3 (IQR 1.5-5). Most SEs were gastrointestinal (32.5% of visits) or behavioral/psychiatric (22.4%). SE frequency was lowest with nonsteroidal antiinflammatory drugs alone (34.7%) and highest with prednisone and methotrexate combinations (66%). SE cumulative incidence was 67% (95% CI 59, 75) within 1 year of diagnosis, and 36% (95% CI 28, 44) for actionable AEs. Parent global and QoML scores were worse with SEs present; the impact persisted after adjusting for pain and number of active joints. CONCLUSION: Parents report that two-thirds of children with JIA experience SEs impacting their HRQoL within 1 year of diagnosis. SE mitigation strategies are needed in managing JIA.
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Artritis Juvenil , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos , Artritis Juvenil/diagnóstico , Artritis Juvenil/tratamiento farmacológico , Artritis Juvenil/epidemiología , Canadá/epidemiología , Niño , Humanos , Metotrexato/efectos adversos , Padres , Prednisona/uso terapéutico , Calidad de Vida/psicologíaRESUMEN
OBJECTIVES: To evaluate the ethnic diversity of children with a systemic autoinflammatory disease (SAID) in a multi-ethnic Canadian province. METHODS: Self-reported ethnicity of 149 children and adolescents with a SAID in British Columbia, Canada, was analysed for ethnic representation among individual patients, across the cohort, within particular SAIDs, and compared to provincial census data on ethnic diversity. RESULTS: Half of reported cases had a diagnosis of either PFAPA (23.5%) or an unclassifiable autoinflammatory syndrome (31.5%), with a monogenic SAID diagnosed in only 12.8% of cases. The majority of participants (73.1%) were mixed ethnicity with European and Asian heritage reported most frequently (57.0% and 23.0% of all responses, respectively). Ethnic diversity reflected regional diversity except for West Asian, Arabic, Jewish, and Eastern European heritage, which were over-represented in SAID patients, and Chinese descent, which was under-represented in our cohort compared to the general population of British Columbia. CONCLUSIONS: Results from this study show extensive multi-ethnic diversity in individual patients and across the various SAIDs inclusive of monogenic SAIDs that are frequently associated with particular ethnicities. Although not disproportionately represented, this is the first report of systemic autoinflammatory disease in Canadian children of Indigenous heritage.