First name
Jon
Middle name
M
Last name
Burnham

Title

Evaluation of pediatric rheumatology telehealth satisfaction during the COVID-19 pandemic.

Year of Publication

2021

Number of Pages

170

Date Published

2021 Dec 09

ISSN Number

1546-0096

Abstract

<p><strong>BACKGROUND: </strong>During the Coronavirus disease 2019 pandemic, ambulatory pediatric rheumatology healthcare rapidly transformed to a mainly telehealth model. However, pediatric patient and caregiver satisfaction with broadly deployed telehealth programs remains largely unknown. This study aimed to evaluate patient/caregiver satisfaction with telehealth and identify the factors associated with satisfaction in a generalizable sample of pediatric rheumatology patients.</p>

<p><strong>METHODS: </strong>Patients with an initial telehealth video visit with a rheumatology provider between April and June 2020 were eligible. All patients/caregivers were sent a post-visit survey to assess a modified version of the Telehealth Usability Questionnaire (TUQ) and demographic and clinical characteristics. TUQ total and sub-scale (usefulness, ease of use, effectiveness, satisfaction) scores were calculated and classified as "positive" based on responses of "agree" or "strongly agree" on a 5-point Likert scale. Results were analyzed using standard descriptive statistics and Wilcoxon signed rank testing. The association between demographic and clinical characteristics with TUQ scores was assessed using univariate linear regression.</p>

<p><strong>RESULTS: </strong>597 patients/caregivers met inclusion criteria, and the survey response rate was 42% (n = 248). Juvenile idiopathic arthritis was the most common diagnosis (33.5%). The majority of patients were diagnosed greater than 6 months previously (72.6%) and were prescribed chronic medications (59.7%). The median total TUQ score was 4 (IQR: 4-5) with positive responses in 81% of items. Of the subscales, usefulness scores were lowest (median: 4, p &lt; 0.001). Telehealth saves time traveling was the highest median item score (median = 5, IQR: 4-5). Within subscales, items that scored significantly lower included convenience, providing for needs, seeing rheumatologist as well as in person, and being an acceptable way to receive rheumatology services (all p &lt; 0.001). There were no significant demographic or clinical features associated with TUQ scores.</p>

<p><strong>CONCLUSIONS: </strong>Our results suggest telehealth is a promising mode of healthcare delivery for pediatric rheumatic diseases but also identifies opportunities for improvement. Innovation and research are needed to design a telehealth system that delivers high quality and safe care that improves healthcare outcomes. Since telehealth is a rapidly emerging form of pediatric rheumatology care, improved engagement and training of patients, caregivers, and providers may help improve the patient experience in the future.</p>

DOI

10.1186/s12969-021-00649-4

Alternate Title

Pediatr Rheumatol Online J

PMID

34886863

Title

Determinants of disease activity change over time in Enthesitis related arthritis: effect of structured outcome monitoring and clinical decision support.

Year of Publication

2020

Number of Pages

79

Date Published

2020 Oct 15

ISSN Number

1546-0096

Abstract

<p><strong>BACKGROUND: </strong>We aimed to test if standardized point-of-care outcome monitoring and clinical decision support (CDS), as compared to standard care, improves disease activity and patient-reported pain in children with enthesitis-related arthritis (ERA).</p>

<p><strong>METHODS: </strong>This was a retrospective cohort study of outcomes of children with ERA after phased implementation of I) standardized outcome monitoring with CDS for polyarticular JIA, and II) CDS for ERA, compared to a pre-intervention group of historical controls. We used multivariable mixed-effects models for repeated measures to test whether implementation phase or other disease characteristics were associated with change over time in disease activity, as measured by the clinical juvenile arthritis disease activity score (cJADAS), and pain.</p>

<p><strong>RESULTS: </strong>One hundred fifty-two ERA patients (41% incident cases) were included with a median age of 14.9 years. Implementation of standardized outcome monitoring or ERA-specific CDS did not result in significant differences in cJADAS or pain over time compared to the pre-intervention cohort. Higher cJADAS at the index visit, pain and more tender entheses were significantly associated with higher cJADAS scores over time (all p &lt; 0.01), while biologic use was associated with lower cJADAS (p = 0.02). Regardless of intervention period, incident ERA cases had a greater rate of cJADAS improvement over time compared to prevalent cases (p &lt; 0.01), but pain persisted over time among both incident and prevalent cases.</p>

<p><strong>CONCLUSIONS: </strong>There was no significant effect of point-of-care outcome monitoring or CDS interventions on disease activity or pain over time in children with ERA in this single center study. Future efforts to improve disease outcomes using standardized outcome monitoring and CDS will need to consider the importance of addressing pain as a target in addition to spondyloarthritis-specific disease activity metrics.</p>

DOI

10.1186/s12969-020-00472-3

Alternate Title

Pediatr Rheumatol Online J

PMID

33059694

Title

Longitudinal assessment of racial disparities in juvenile idiopathic arthritis disease activity in a treat-to-target intervention.

Year of Publication

2020

Number of Pages

88

Date Published

2020 Nov 13

ISSN Number

1546-0096

Abstract

<p><strong>BACKGROUND: </strong>We sought to evaluate racial disparities in disease outcomes among children with polyarticular juvenile idiopathic arthritis (JIA) during a treat-to-target (TTT) intervention with clinical decision support (CDS).</p>

<p><strong>METHODS: </strong>This was a retrospective analysis of a TTT-CDS strategy integrated into clinical practice for children with polyarticular JIA at a single center from 2016 to 2019. The primary outcome was the clinical Juvenile Arthritis Disease Activity Score (cJADAS-10). We used multivariable linear regression to assess racial differences in disease outcomes at the index visit (first visit after implementation). The effect of race on disease outcomes over time was estimated using linear mixed-effects models, stratified by incident or prevalent disease.</p>

<p><strong>RESULTS: </strong>We included 159 children with polyarticular JIA, of which 74, 13 and 13% were white, black, and Asian/other, respectively. cJADAS-10 improved significantly over time for all race categories, while the rates of improvement did not differ by race in incident (p = 0.53) or prevalent cases (p = 0.58). cJADAS-10 over time remained higher among black children compared to white children (β 2.5, p &lt; 0.01 and β 1.2, p = 0.08 for incident and prevalent cases, respectively). Provider attestation to CDS use at ≥50% of encounters was associated with a 3.9 greater reduction in cJADAS-10 among black children compared to white children (p = 0.02).</p>

<p><strong>CONCLUSION: </strong>Despite similar rates of improvement over time by race, disparities in JIA outcomes persisted throughout implementation of a TTT-CDS approach. More consistent CDS use may have a greater benefit among black children and needs to be explored further.</p>

DOI

10.1186/s12969-020-00485-y

Alternate Title

Pediatr Rheumatol Online J

PMID

33187519

Title

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

Year of Publication

2019

Number of Pages

e000725

Date Published

2019

ISSN Number

2399-6641

Abstract

<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>

DOI

10.1136/bmjoq-2019-000725

Alternate Title

BMJ Open Qual

PMID

31803853

Title

Variation in Preventive Care in Children Receiving Chronic Glucocorticoid Therapy.

Year of Publication

2016

Date Published

2016 Sep 9

ISSN Number

1097-6833

Abstract

<p><strong>OBJECTIVE: </strong>To assess preventive care measure prescribing in children exposed to glucocorticoids and identify prescribing variation according to subspecialty and patient characteristics.</p>

<p><strong>STUDY DESIGN: </strong>Retrospective cohort study of children initiating chronic glucocorticoids in the gastroenterology, nephrology, and rheumatology divisions at a pediatric tertiary care center. Outcomes included 25-hydroxyvitamin D (25OHD) and lipid testing, pneumococcal polysaccharide (PPV) and influenza vaccination, and stress dose hydrocortisone prescriptions.</p>

<p><strong>RESULTS: </strong>A total of 701 children were followed for a median of 589 days. 25OHD testing was performed in 73%, lipid screening in 29%, and PPV and influenza vaccination in 16% and 78%, respectively. Hydrocortisone was prescribed in 2%. Across specialties, 25OHD, lipid screening, and PPV prescribing varied significantly (all P &lt; .001). Using logistic regression adjusting for specialty, 25OHD testing was associated with older age, female sex, non-Hispanic ethnicity, and lower baseline height and body mass index z-scores (all P &lt; .03). Lipid screening was associated with older age, higher baseline body mass index z-score, and lower baseline height z-score (all P &lt; .01). Vaccinations were associated with lower age (P &lt; .02), and PPV completion was associated with non-White race (P = .04).</p>

<p><strong>CONCLUSIONS: </strong>Among children chronically exposed to glucocorticoids, 25OHD testing and influenza vaccination were common, but lipid screening, pneumococcal vaccination, and stress dose hydrocortisone prescribing were infrequent. Except for influenza vaccination, preventive care measure use varied significantly across specialties. Quality improvement efforts are needed to optimize preventive care in this high-risk population.</p>

DOI

10.1016/j.jpeds.2016.08.041

Alternate Title

J. Pediatr.

PMID

27622698

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