In a session presented at the American College of Rheumatology (ACR) Convergence 2022 in Philadelphia, Pennsylvania, experts discussed quality improvement (QI) approaches to addressing health care disparities among patients in pediatric rheumatology.1
Health Equity in QI Approaches
Emily Smitherman, MD, MS, assistant professor in the Department of Pediatrics in the Division of Pediatric Rheumatology at the University of Alabama at Birmingham, noted certain population management approaches to identify potential gaps in care.
She explained that inequities documented in pediatric rheumatology have been observed in care access and delivery, patient health, and quality of life outcomes, based on variables, such as race, ethnicity, insurance type, and region.2
In working toward potential solutions, Dr Smitherman emphasized that equity should be at the forefront of all QI work. The first step, she noted, was to consider the measures being used to identify and monitor disparities in pediatric rheumatology. She mentioned that there is a push toward standardizing these measures and developing targeted strategies to reduce inequities, such as screening of social risk factors for use in the clinic.
In developing a framework to integrate health equity into the process of implementing QI measures, Dr Smitherman highlighted steps including reviewing baseline data for existing disparities, building an equitable team that includes patients, creating equity-focused goals, and brainstorming improvements.
Dr Smitherman distinguished the population management approach as related to determinants of health vs the focus on broader determinants in a population health approach. She said, one of the components of a population management approach should be a patient registry.
For example, a pediatric rheumatology center uses a dashboard based on their electronic health record (EHR) data to monitor various outcomes for their patients with juvenile idiopathic arthritis (JIA) to inform solutions.3 These data could also be stratified by race, ethnicity, and sex to incorporate health equity measures.
In summary, Dr Smitherman reiterated that health care – ie, quality of care – is a modifiable determinant of health; a system to collect and monitor data is essential to address disparities; and implementation of a population management approach is a feasible method to identify disparities in health care quality.
Mental Health Disparities in Pediatric Rheumatology
Mileka Gilbert, MD, PhD, a pediatric rheumatologist at the Medical University of South Carolina, described QI methods to address disparities in mental health screening in patients in pediatric rheumatology, a population with elevated rates of mental health disorders. In patients with childhood-onset lupus, for example, reported rates of depression and anxiety are 20% to 59% and 17% to 37%, respectively.4 In JIA, rates of depression and anxiety are 36% and 64%, respectively.5 Comorbid mental health disorders in these populations are associated with factors such as medication nonadherence and greater disability and pain.
Dr Gilbert noted race-based mental health disparities in pediatric rheumatologic diseases. Black youth with childhood-onset lupus are more affected by mental health disorders but less likely to receive diagnosis and treatment. In addition, non-White race and longer disease duration are independent risk factors for depression and suicidal ideation in childhood-onset lupus.6
“So, given the known disparate outcomes in Black adolescents and young adults with lupus, it is imperative that we address mental health disparities in our clinics to improve lupus outcomes,” she stated.
Gilbert and colleagues designed an equitable process for depression screening and response for children with rheumatic disease, which included stakeholder analysis to ensure buy-in from clinicians and leadership and to evaluate logistic issues. As “patients and families are the most important stakeholders,” it is important to have representation of diverse patient and family voices in terms of race, ethnicity, primary language, and socioeconomic status, Dr Gilbert said.7
The team used a readiness assessment tool to prepare clinics for adoption of the depression screening tool, including ensuring staff awareness of the relationship between mental health and physical health, having a crisis plan in place for mental health emergencies that may occur within the clinic, and keeping an up-to-date list of mental health care providers.
The next step, she noted, involved determining the action warranted based on severity of depression. Medium to severe depression might prompt a referral to a mental health care provider, while those with mild depression might receive a list of providers in case the patient or parent would like to consider additional care.
Dr Gilbert pointed to the American board of Pediatrics as a great resource for improving the emotional health of pediatric patients with chronic conditions, including advice on how to discuss mental health with patients and families.
Addressing Disparities to Improve Health Outcomes
Jon Burnham, MD, MS, clinical director and quality improvement leader in the Division of Rheumatology at the Children’s Hospital of Philadelphia, proposed that measuring outcomes in certain patient populations and stratifying by demographic factors can highlight disparities in QI work and inform efforts to improve outcomes.
He noted that JIA outcomes are suboptimal, especially among Black vs non-Black children who have greater odds of radiographic damage.8 “There’s more than biology at play” in these outcomes, he said, and pervasive differences in health care delivery may contribute to the observed disparities.
In 2016, Burnham and colleagues started a project aiming to standardize the clinical assessment and treatment of patients with JIA, using a treat-to-target approach. At each encounter, the patient or parent fills out a survey including patient-reported outcomes (PROs), such as Patient Reported Outcomes Measurement Information System (PROMIS®) mobility score, as well as pain scores.
The clinician then completes the clinical evaluation and the Juvenile Arthritis Disease Activity Score (JADAS) and reviews the PROMIS and pain scores and engages in shared decision-making to evaluate treat-to-target status and make a treatment decision, and patients with polyarticular JIA access clinical decision support.
After using this approach for approximately 3 years, Burnham and colleagues found a 46% reduction in the mean JADAS in the polyarthritic JIA population.
To examine disparities in health outcomes across different patient groups, Dr Burnham explained that data would need to be segmented and analyzed by race, ethnicity, and other variables. If a disparity is identified, this indicates a need to identify differences in health care delivery.
His team noticed a loss in progress following the onset of the COVID-19 pandemic, with a regression in outcomes in non-Hispanic Black population in both the JADAS and scores on other measures including pain assessments. They determined that the higher JADAS scores were driven largely by differences reported by patients rather than clinicians.8
In response to these findings, the team agreed on a goal to decrease disparities between non-Hispanic Black and non-Hispanic White patients by 50% by June 2024, and they explored potential contributors and honed in on 2 relevant areas: more efficient scheduling of appointments for high-risk patients and improvement of clinician advocacy in assessing PROs and barriers to care.
Steps to address these issues include staff improvement in high-priority scheduling, such as identifying patients with high disease activity and those without appointments. Subsequent steps include empowering clinicians via quarterly workshops involving collaboration to develop patient-specific plans with a multidisciplinary team, and a maintenance of certification credit for participation in these efforts.
- Quality improvement approaches to addressing disparities in health outcomes. Presented at: ACR Convergence 2022; November 10-14; Philadelphia, PA. Session 13S175.
- Akinsete AM, Woo JMP, Rubinstein TB. Disparities in pediatric rheumatic diseases. Rheum Dis Clin North Am. 2022;48(1):183-198. doi:10.1016/j.rdc.2021.09.014
- Taxter A, Johnson L, Tabussi D, et al. Co-design of an electronic dashboard to support the coproduction of care in pediatric rheumatic disease: human-centered design and usability testing. J Particip Med. 2022;14(1):e34735. doi:10.2196/34735
- Quilter MC, Hiraki LT, Korczak DJ. Depressive and anxiety symptom prevalence in childhood-onset systemic lupus erythematosus: a systematic review. Lupus. 2019;28(7). doi:10.1177/096120331985362
- Fair DC, Rodriguez M, Knight AM, Rubinstein TB. Depression and anxiety in patients with juvenile idiopathic arthritis: current insights and impact on quality of life, a systematic review. Open Access Rheumatol. 2019;11: 237-252. doi:10.2147/OARRR.S174408
- Knight A, Weiss P, Morales K, Gerdes M, Rearson M, Vickery M. Identifying differences in risk factors for depression and anxiety in pediatric chronic disease: a matched cross-sectional study of youth with lupus/mixed connective tissue disease and their peers with diabetes. J Pediatr. 2015;167(6):1397-1403. doi:10.1016/j.jpeds.2015.07.048
- Vara E, Gilbert M, Ruth NM. Health disparities in outcomes of pediatric systemic lupus erythematosus. Front Pediatr. Published online October 14, 2022. doi:10.3389/fped.2022.879208
- Chang JC, Xiao R, Burnham JM, Weiss PF. Longitudinal assessment of racial disparities in juvenile idiopathic arthritis disease activity in a treat-to-target intervention. Pediatr Rheumatol. 2020;18:88. doi:10.1186/s12969-020-00485-y