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  • 1
    Online Resource
    Online Resource
    Wiley ; 2003
    In:  Science News Vol. 164, No. 18 ( 2003-11-01), p. 287-
    In: Science News, Wiley, Vol. 164, No. 18 ( 2003-11-01), p. 287-
    Type of Medium: Online Resource
    ISSN: 0036-8423
    Language: Unknown
    Publisher: Wiley
    Publication Date: 2003
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    detail.hit.zdb_id: 960403-0
    detail.hit.zdb_id: 2779490-8
    SSG: 11
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  • 2
    In: Pediatric Rheumatology, Springer Science and Business Media LLC, Vol. 20, No. 1 ( 2022-12)
    Abstract: The translation of research findings into clinical practice is challenging, especially fields like in pediatric rheumatology, where the evidence base is limited, there are few clinical trials, and the conditions are rare and heterogeneous. Implementation science methodologies have been shown to reduce the research- to- practice gap in other clinical settings may have similar utility in pediatric rheumatology. This paper describes the key discussion points from the inaugural Childhood Arthritis and Rheumatology Research Alliance Implementation Science retreat held in February 2020. The aim of this report is to synthesize those findings into an Implementation Science Roadmap for pediatric rheumatology research. This roadmap is based on three foundational principles: fostering curiosity and ensuring discovery, integration of research and quality improvement, and patient-centeredness. We include six key steps anchored in the principles of implementation science. Applying this roadmap will enable researchers to evaluate the full range of research activities, from the initial clinical design and evidence acquisition to the application of those findings in pediatric rheumatology clinics and direct patient care.
    Type of Medium: Online Resource
    ISSN: 1546-0096
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
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  • 3
    In: Lupus, SAGE Publications, Vol. 32, No. 9 ( 2023-08), p. 1111-1116
    Abstract: Studies of real-world effectiveness of belimumab in adults with systemic lupus erythematosus have shown improved disease control and decreased oral glucocorticoid use. However, belimumab use outside of clinical trial settings has not been well studied in childhood-onset systemic lupus erythematosus (cSLE). We aimed to characterize indications for belimumab use and evaluate oral glucocorticoid doses and disease activity scores in the year following belimumab initiation at a single, large pediatric rheumatology center. Methods We included children and young adults with cSLE who received ≥ 1 dose of belimumab. Repeated measures one-way ANOVA was used to compare SLEDAI-2K scores and prednisone-equivalent daily oral glucocorticoid doses at baseline, 6 months, and 12 months after belimumab initiation for those who continued therapy for a year. Results We identified 21 patients with cSLE who received ≥ 1 dose of belimumab. The median disease duration at belimumab initiation was 30.8 months [IQR 21.0-79.1]. At the time of belimumab initiation, 100% of patients were taking an antimalarial, 81% were on oral glucocorticoids, and 91% were on at least one conventional DMARD. Thirteen patients (62%) continued belimumab for ≥6 months and 11 (52%) for ≥12 months. Among those continuing belimumab for ≥12 months, median [IQR] oral prednisone daily doses in milligrams at baseline, 6 months, and 12 months were 12.5 [7.5–17.5], 9 [6.25–10] , and 5 [5–9.5], p = 0.037, and median [IQR] SLEDAI-2K scores at baseline, 6 months, and 12 months were 8 [5.5–10.5], 6 [3.5–10] , and 6 [6–8.5], p = 0.548, respectively. Conclusions In our cohort of pediatric patients with lupus and moderate disease activity treated with belimumab for ≥12 months, daily oral glucocorticoid doses were significantly lower 6 and 12 months after belimumab initiation than baseline. Use in patients with active nephritis was uncommon. Further research is needed in a large, multicenter cohort to determine the real-world effectiveness of belimumab in children and develop guidelines for use.
    Type of Medium: Online Resource
    ISSN: 0961-2033 , 1477-0962
    RVK:
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2023
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  • 4
    In: Arthritis Care & Research, Wiley, Vol. 75, No. 3 ( 2023-03), p. 550-558
    Abstract: Despite high rates of medication nonadherence among patients with systemic lupus erythematosus (SLE), effective interventions to improve adherence in SLE are limited. We aimed to assess the feasibility of a pilot intervention and explore its effect on adherence. Methods The intervention used pharmacy refill data to monitor nonadherence and prompt discussions surrounding SLE medications during clinic encounters. Over 12 weeks, the intervention was delivered through routine clinic visits by providers to patients with SLE who take SLE‐specific medications. We measured acceptability, appropriateness, and feasibility using provider surveys. We also measured acceptability by patient surveys and feasibility by medical record documentation. We explored change in adherence by comparing percent of patients with medication possession ratio (MPR) ≥80% 3 months before and after the intervention visit using the McNemar's test. Results Six rheumatologists participated; 130 patients were included in the analysis (median age 43, 95% female, and 59% racial and ethnic minorities). Implementation of the intervention was documented in 89% of clinic notes. Provider surveys showed high scores for feasibility (4.7/5), acceptability (4.4/5), and appropriateness (4.6/5). Among patient surveys, the most common reactions to the intervention visit were feeling determined (32%), empowered (32%), and proud (19%). Proportion of patients with MPR ≥80% increased from 48% to 58% ( P  = 0.03) after the intervention visit. Conclusion Our intervention showed feasibility, acceptability, and appropriateness and led to a statistically significant improvement in adherence. Future work should refine the intervention, assess its efficacy in a controlled setting, and adapt its use among other clinic settings.
    Type of Medium: Online Resource
    ISSN: 2151-464X , 2151-4658
    URL: Issue
    RVK:
    Language: English
    Publisher: Wiley
    Publication Date: 2023
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  • 5
    In: BMJ Open Quality, BMJ, Vol. 7, No. 3 ( 2018-07), p. e000269-
    Abstract: Teratogenic medications are often prescribed to women of childbearing age with autoimmune diseases. Literature suggests that appropriate use of contraception among these women is low, potentially resulting in high-risk unintended pregnancies. Preliminary review in our clinic showed suboptimal documentation of women’s contraceptive use. We therefore designed a quality improvement initiative to target three process measures: documentation of contraception usage and type, contraception counselling and provider action after counselling. We reviewed charts of rheumatology clinic female patients aged 18–45 over the course of 10 months; for those who were on teratogenic medications (methotrexate, leflunomide, mycophenolate and cyclophosphamide), we looked for evidence of documentation of contraception use. We executed multiple plan-do-study-act (PDSA) cycles to develop and evaluate interventions, which centred on interprofessional provider education, modification of electronic medical record (EMR) templates, periodic provider reminders, patient screening questionnaires and frequent feedback to providers on performance. Among eligible patients (n=181), the baseline rate of documentation of contraception type was 46%, the rate of counselling was 30% and interventions after counselling occurred in 33% of cases. Averaged intervention data demonstrated increased provider performance in all three domains: documentation of contraception type increased to 64%, counselling to 45% and provider action to 46%. Of the patients with documented contraceptives, 50% used highly effective, 27% used effective and 23% used ineffective contraception methods. During this project, one unintentional pregnancy occurred in a patient on methotrexate not on contraception. Our interventions improved three measures related to contraception counselling and documentation, but there remains a need for ongoing quality improvement efforts in our clinic. This high-risk population requires increased provider engagement to improve contraception compliance, coupled with system-wide EMR changes to increase sustainability.
    Type of Medium: Online Resource
    ISSN: 2399-6641
    Language: English
    Publisher: BMJ
    Publication Date: 2018
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  • 6
    In: Arthritis & Rheumatology, Wiley
    Abstract: We compared clinical characteristics and renal response in patients with childhood‐onset proliferative lupus nephritis (LN) treated with the EuroLupus versus NIH cyclophosphamide (CYC) regimen. Methods A retrospective cohort study was conducted at 11 pediatric centers in North America that reported using both CYC regimens. Data were extracted from the electronic medical record at baseline, 3, 6 and 12 months after treatment initiation with CYC. To evaluate the adjusted association between CYC regimen (EuroLupus vs. NIH) and renal response over time, generalized estimating equations with a logit link were used. An interaction between time and CYC regimen was included, and a contrast between CYC regimens at 12‐months was used to evaluate the primary outcome. Results One hundred and forty‐five patients (58 EuroLupus, 87 NIH) were included. EuroLupus patients were on average older at the start of current cyclophosphamide therapy, had longer disease duration, and more commonly had relapsed or refractory LN compared to the NIH group. After multivariable adjustment, there was no significant association between CYC regimen and achieving complete renal response at 12 months (Odds Ratio (OR) of response for the EuroLupus regimen, reference NIH regimen: 0.76, 95% Confidence Interval (CI) 0.29, 1.98). There was also no significant association between CYC regimen and achieving at least a partial renal response at 12 months (OR 1.35, 95% CI 0.57, 3.19). Conclusion Our study failed to demonstrate a benefit of the NIH regimen over the EuroLupus CYC regimen in childhood‐onset proliferative LN. However, future prospective outcome studies are needed. image
    Type of Medium: Online Resource
    ISSN: 2326-5191 , 2326-5205
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    RVK:
    Language: English
    Publisher: Wiley
    Publication Date: 2023
    detail.hit.zdb_id: 2754614-7
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  • 7
    In: Journal of Immunotherapy, Ovid Technologies (Wolters Kluwer Health), Vol. 31, No. 3 ( 2008-04), p. 235-245
    Type of Medium: Online Resource
    ISSN: 1524-9557
    Language: English
    Publisher: Ovid Technologies (Wolters Kluwer Health)
    Publication Date: 2008
    detail.hit.zdb_id: 2048797-6
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  • 8
    Online Resource
    Online Resource
    BMJ ; 2018
    In:  Lupus Science & Medicine Vol. 5, No. 1 ( 2018-08), p. e000282-
    In: Lupus Science & Medicine, BMJ, Vol. 5, No. 1 ( 2018-08), p. e000282-
    Abstract: The prevalence of paediatric-onset SLE (pSLE) is estimated at 1million people worldwide and accounts for a significant proportion of SLE morbidity, mortality and cost. Patients with pSLE are especially vulnerable during and immediately following transfer from paediatric to adult rheumatology care, when substantial delays in care and increased disease activity are common. Transition is the process through which adolescents and young adults (AYA) develop the skills needed to succeed in the adult healthcare environment, a process that typically takes several years and may span a patient’s time in paediatric and adult clinics. Recommendations for improving transition and transfer for AYA with pSLE include setting expectations of the AYA patient and family concerning transition and transfer, developing AYA’s self-management skills, preparing an individualised transition plan that identifies a date for transfer, transferring at a time of medical and social stability, coordinating communication between the paediatric and adult rheumatologists (inclusive of both a medical summary and key social factors), and identifying a transition coordinator as a point person for care transfer and to monitor the AYA’s arrival and retention in adult rheumatology care. Of paramount importance is empowering the adult rheumatologist with skills that enhance rapport with AYA patients, engage AYA patients and families in adult care models, promote adherence and encourage ongoing development of self-management skills.
    Type of Medium: Online Resource
    ISSN: 2053-8790
    Language: English
    Publisher: BMJ
    Publication Date: 2018
    detail.hit.zdb_id: 2779620-6
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  • 9
    In: Lupus, SAGE Publications, Vol. 30, No. 10 ( 2021-09), p. 1660-1670
    Abstract: Lupus nephritis (LN) is a life-threatening manifestation of systemic lupus erythematosus (SLE) and is more common in children than adults. The epidemiology and management of childhood-onset SLE (cSLE) have changed over time, prompting the need to reassess expected outcomes. The purpose of this study is to use the Childhood Arthritis and Rheumatology Research Alliance (CARRA) prospective registry to validate historical principles of LN in a contemporary, real-world cohort. After an extensive literature review, six principles of LN in cSLE were identified. The CARRA registry was queried to evaluate these principles in determining the rate of LN in cSLE, median time from cSLE diagnosis to LN, short-term renal outcomes, and frequency of rituximab as an induction therapy. Of the 677 cSLE patients in the CARRA registry, 32% had documented LN. Decline in kidney function was more common in Black cSLE patients than non-Black patients ( p = 0.04). Black race was associated with worse short-term renal outcomes. In short-term follow up, most children with LN had unchanged or improved kidney function, and end stage kidney disease (ESKD) was rare. Ongoing follow-up of cSLE patients in the CARRA registry will be necessary to evaluate long-term outcomes to inform risk, management, and prognosis of LN in cSLE.
    Type of Medium: Online Resource
    ISSN: 0961-2033 , 1477-0962
    RVK:
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2021
    detail.hit.zdb_id: 2008035-9
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  • 10
    In: Arthritis Care & Research, Wiley, Vol. 74, No. 9 ( 2022-09), p. 1459-1467
    Abstract: Underrepresented racial and ethnic minorities are disproportionately affected by systemic lupus erythematosus (SLE). Racial and ethnic minorities also have more severe SLE manifestations that require use of immunosuppressive medications, and often have lower rates of medication adherence. We aimed to explore barriers of adherence to SLE immunosuppressive medications among minority SLE patients. Methods We conducted a qualitative descriptive study using in‐depth interviews with a purposive sample of racial minority SLE patients taking oral immunosuppressants (methotrexate, azathioprine, or mycophenolate), and lupus clinic providers and staff. Interviews were audiorecorded, transcribed, and analyzed using applied thematic analysis. We grouped themes using the Capability, Opportunity, Motivation, Behavior conceptual model. Results We interviewed 12 SLE patients (4 adherent, 8 nonadherent) and 12 providers and staff. We identified capability barriers to include external factors related to acquiring medications, specifically cost‐, pharmacy‐, and clinic‐related issues; opportunity barriers to include external barriers to taking medications, specifically logistic‐ and medication‐related issues; and motivation factors to include intrinsic barriers, encompassing patients' knowledge, beliefs, attitudes, and physical and mental health. The most frequently described barriers were cost, side effects, busyness/forgetting, and lack of understanding, although barriers differed by patient and adherence level, with logistic and intrinsic barriers described predominantly by nonadherent patients and side effects described predominantly by adherent patients. Conclusion Our findings suggest that interventions may be most impactful if they are designed to facilitate logistics of taking medications and increase patients' motivation while allowing for personalization to address the individual differences in adherence barriers.
    Type of Medium: Online Resource
    ISSN: 2151-464X , 2151-4658
    URL: Issue
    RVK:
    Language: English
    Publisher: Wiley
    Publication Date: 2022
    detail.hit.zdb_id: 2016713-1
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