Improving outcomes of pediatric lupus care delivery with provider goal setting activities and multidisciplinary care models.

2023

04/2023

2151-4658

OBJECTIVES: Using an electronic health record (EHR)-enabled pediatric lupus registry, we evaluated high-quality care delivery in the context of provider goal-setting activities and a multidisciplinary care model. We then determined associations between care quality and prednisone use among youth with systemic lupus erythematosus (SLE).

METHODS: We implemented standardized EHR documentation tools to auto-populate a SLE registry. We compared pediatric lupus care index (p-LuCI) performance (range 0.0-1.0; 1.0 representing perfect metric adherence) and timely follow-up a) before vs. during provider goal-setting activities and population management, and b) in multidisciplinary lupus nephritis vs. rheumatology clinic. We estimated associations between p-LuCI and subsequent prednisone use, adjusted for time, current medication, disease activity, clinical features, and social determinants of health.

RESULTS: We analyzed 830 visits by 110 patients (median 7 visits/patient [IQR 4-10]) over 3.5 years. The provider-directed activity was associated with improved p-LuCI performance (adjusted β 0.05, 95%CI [0.01-0.09]; mean 0.74 vs. 0.69). Patients with nephritis in multidisciplinary clinic had higher p-LuCI (adjusted β 0.06, 95%CI [0.02-0.10]) and likelihood of timely follow-up than those in rheumatology (adjusted RR 1.27, 95%CI [1.02-1.57]). p-LuCI ≥0.50 was associated with 0.72-fold lower adjusted risk of subsequent prednisone use (95%CI [0.53-0.93]). Minoritized race, public insurance, and living in areas with greater social vulnerability were not associated with reduced care quality or follow-up, but public insurance was associated with higher risk of prednisone use.

CONCLUSION: Greater attention to quality metrics associates with better outcomes in childhood SLE. Multidisciplinary care models with population management may additionally facilitate equitable care delivery. This article is protected by copyright. All rights reserved.

10.1002/acr.25134

Arthritis Care Res (Hoboken)

37070611

Improving outcomes of pediatric lupus care delivery with provider goal setting activities and multidisciplinary care models.

2023

04/2023

2151-4658

OBJECTIVES: Using an electronic health record (EHR)-enabled pediatric lupus registry, we evaluated high-quality care delivery in the context of provider goal-setting activities and a multidisciplinary care model. We then determined associations between care quality and prednisone use among youth with systemic lupus erythematosus (SLE).

METHODS: We implemented standardized EHR documentation tools to auto-populate a SLE registry. We compared pediatric lupus care index (p-LuCI) performance (range 0.0-1.0; 1.0 representing perfect metric adherence) and timely follow-up a) before vs. during provider goal-setting activities and population management, and b) in multidisciplinary lupus nephritis vs. rheumatology clinic. We estimated associations between p-LuCI and subsequent prednisone use, adjusted for time, current medication, disease activity, clinical features, and social determinants of health.

RESULTS: We analyzed 830 visits by 110 patients (median 7 visits/patient [IQR 4-10]) over 3.5 years. The provider-directed activity was associated with improved p-LuCI performance (adjusted β 0.05, 95%CI [0.01-0.09]; mean 0.74 vs. 0.69). Patients with nephritis in multidisciplinary clinic had higher p-LuCI (adjusted β 0.06, 95%CI [0.02-0.10]) and likelihood of timely follow-up than those in rheumatology (adjusted RR 1.27, 95%CI [1.02-1.57]). p-LuCI ≥0.50 was associated with 0.72-fold lower adjusted risk of subsequent prednisone use (95%CI [0.53-0.93]). Minoritized race, public insurance, and living in areas with greater social vulnerability were not associated with reduced care quality or follow-up, but public insurance was associated with higher risk of prednisone use.

CONCLUSION: Greater attention to quality metrics associates with better outcomes in childhood SLE. Multidisciplinary care models with population management may additionally facilitate equitable care delivery. This article is protected by copyright. All rights reserved.

10.1002/acr.25134

Arthritis Care Res (Hoboken)

37070611

Evidence of thrombotic microangiopathy in children with SARS-CoV-2 across the spectrum of clinical presentations.

2020

6051-6063

2020 12 08

2473-9537

<p>Most children with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection have mild or minimal disease, with a small proportion developing severe disease or multisystem inflammatory syndrome in children (MIS-C). Complement-mediated thrombotic microangiopathy (TMA) has been associated with SARS-CoV-2 infection in adults but has not been studied in the pediatric population. We hypothesized that complement activation plays an important role in SARS-CoV-2 infection in children and sought to understand if TMA was present in these patients. We enrolled 50 hospitalized pediatric patients with acute SARS-CoV-2 infection (n = 21, minimal coronavirus disease 2019 [COVID-19]; n = 11, severe COVID-19) or MIS-C (n = 18). As a biomarker of complement activation and TMA, soluble C5b9 (sC5b9, normal 247 ng/mL) was measured in plasma, and elevations were found in patients with minimal disease (median, 392 ng/mL; interquartile range [IQR], 244-622 ng/mL), severe disease (median, 646 ng/mL; IQR, 203-728 ng/mL), and MIS-C (median, 630 ng/mL; IQR, 359-932 ng/mL) compared with 26 healthy control subjects (median, 57 ng/mL; IQR, 9-163 ng/mL; P &lt; .001). Higher sC5b9 levels were associated with higher serum creatinine (P = .01) but not age. Of the 19 patients for whom complete clinical criteria were available, 17 (89%) met criteria for TMA. A high proportion of tested children with SARS-CoV-2 infection had evidence of complement activation and met clinical and diagnostic criteria for TMA. Future studies are needed to determine if hospitalized children with SARS-CoV-2 should be screened for TMA, if TMA-directed management is helpful, and if there are any short- or long-term clinical consequences of complement activation and endothelial damage in children with COVID-19 or MIS-C.</p>

10.1182/bloodadvances.2020003471

Blood Adv

33290544

Multisystem inflammatory syndrome in children and COVID-19 are distinct presentations of SARS-CoV-2.

2020

2020 Jul 30

1558-8238

<p><strong>BACKGROUND: </strong>Initial reports from the Severe Acute Respiratory Coronavirus 2 (SARS-CoV-2) pandemic described children as being less susceptible to Coronavirus Disease 2019 (COVID-19) than adults. Subsequently, a severe and novel pediatric disorder termed Multisystem Inflammatory Syndrome in Children (MIS-C) emerged. We report on unique hematologic and immunologic parameters that distinguish between COVID-19 and MIS-C and provide insight into pathophysiology.</p>

<p><strong>METHODS: </strong>We prospectively enrolled hospitalized patients with evidence of SARS-CoV-2 infection and classified them as having MIS-C or COVID-19. Patients with COVID-19 were classified as having either minimal or severe disease. Cytokine profiles, viral cycle thresholds (Cts), blood smears, and soluble C5b-9 values were analyzed with clinical data. Twenty patients were enrolled (9 severe COVID-19, 5 minimal COVID-19, and 6 MIS-C). Five cytokines (IFN-γ, IL-10, IL-6, IL-8 and TNF-α) contributed to the analysis. TNF-α and IL-10 discriminated between patients with MIS-C and severe COVID-19. Cts and burr cells on blood smears also differentiated between patients with severe COVID-19 and those with MIS-C.</p>

<p><strong>CONCLUSION: </strong>Pediatric patients with SARS-CoV-2 are at risk for critical illness with severe COVID-19 and MIS-C. Cytokine profiling and examination of peripheral blood smears may distinguish between patients with MIS-C and severe COVID-19.</p>

10.1172/JCI140970

J. Clin. Invest.

32730233

Enhancing communication and social engagement among clinicians and research teams to improve reliability of research recruitment.

2019

e000725

2019

2399-6641

<p>The success of rare disease research relies heavily on robust partnerships with clinicians to help identify new patients and collect samples. Many studies for paediatric rheumatic diseases requiring pretreatment samples have suffered from slow enrolment rates due to the low incidence of disease and relative urgency to treat. Therefore, timely identification of all potentially eligible patients is crucial. The objective of this project was to apply quality improvement methods to increase the frequency and timeliness of identification of eligible patients with new paediatric rheumatic diagnoses to approach for research studies. A retrospective chart review was undertaken in our paediatric rheumatology clinic to measure the number of eligible patients identified for potential research recruitment between missed recruitment opportunities. Improvement methodology was used to integrate standardised communication between clinicians and the research team into clinic workflow, to leverage social feedback as positive reinforcement for good communication and to measure change in response to the interventions. The number of eligible patients identified between missed recruitment opportunities increased from every 0-1 patient to every 14 patients during the project period, corresponding to an increase in the overall identification rate from 32% to 91% of all eligible patients. Quality improvement methods can be used to successfully integrate research recruitment into routine clinical care and accelerate advances necessary to improve health outcomes.</p>

10.1136/bmjoq-2019-000725

BMJ Open Qual

31803853