PHILADELPHIA—Quality improvement (QI) tools in pediatric rheumatology can help overcome health outcome disparities that are based on race, gender identity, income and other factors, experts said in a session at ACR Convergence.
With it well established that these disparities exist, it’s time to begin eliminating them, said Emily Smitherman, MD, MS, assistant professor of pediatric rheumatology at the University of Alabama at Birmingham.
Real-World Solutions
“We need to start working toward solutions in the real world,” said Dr. Smitherman. “Equity should really be at the forefront of all quality improvement work.”
Dr. Smitherman
A starting point is to think about the measures being used to identify and monitor disparities, she said, adding that standards should be established for capturing key variables on assessing health equity. Measures specifically geared toward health equity, such as screenings by race and ethnicity and screenings for social risk factors, should be woven into care management.
When integrating health equity into QI projects, Dr. Smitherman suggested a framework that includes reviewing baseline data on existing disparities, building a project team that includes patients, setting goals for equity, assessing how social factors contribute to outcomes and then crafting improvements.
She emphasized the use of digital information. “How can we use digital information to plan both individual patient care, but also think about our population and how we’re delivering care?” she asked.
Her center is involved with the Pediatric Rheumatology Care and Outcomes Improvement Network, a multi-center effort with the goal of collecting “data from every visit for every patient at every center, which requires a large data infrastructure.”
“There is a plan to stratify all measures by race, ethnicity [and] sex so both centers can really examine what is happening for our patients across the network,” she said.
Mental Health Parity
Dr. Gilbert
Mileka Gilbert, MD, PhD, associate professor of pediatrics at the Medical University of South Carolina, underscored the importance of using QI processes to address disparities in mental health among children with rheumatic diseases.
Estimated rates of depression among pediatric systemic lupus erythematosus (SLE) patients, for example, are 20% to 59%, with suicidal ideation at 14% and anxiety at 17% to 37%. Juvenile idiopathic arthritis also brings a high rate of mental health concerns, Dr. Gilbert said, and depression and anxiety are associated with a worse quality of life, disability, stress and pain.2
Black children with SLE are more likely to have mental health disorders, but are less likely to be diagnosed and treated, Dr. Gilbert said.1
“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 address lupus outcomes,” Dr. Gilbert said.
Quality improvement to address this problem first involves bringing together stakeholder—physicians, nurses and social workers, mental health providers, administrative leaders, patients and families, according to Dr. Gilbert.
Her center uses the American Board of Pediatrics Readiness Assessment, which sets out goals and lists related health-equity concerns, such as establishing a list of mental health providers, while being mindful of things travel distance, insurance status and other factors, and creating a crisis plan while accounting for contingencies that could complicate that plan.
“We had a patient who we recommended go into the emergency department (ED) for severe depression and suicidal ideation,” Dr. Gilbert said. “But what do you do in the case of a single mom who may need to accompany her child to the ED, but also brought other children with her?”
Clinicians must always be mindful to overcome disparities. “At each step of the process, we have to intentionally ask ourselves, what is the concern for health equity?”
Outcomes Illuminate Disparity
Dr. Burnham
Jon Burnham, MD, MS, clinical director of pediatric rheumatology at the Children’s Hospital of Philadelphia, showed how measuring outcomes in critical patient groups can illuminate disparities.
He described living with juvenile idiopathic arthritis (JIA) as “trying to walk up an escalator that is going in the wrong direction,” constantly monitoring disease and trying treatments and being faced with symptoms and flares. Factors leading to health disparities, such as lack of access to care, missing work and depression, can make that escalator move even faster, he said.
In 2016, his center began a project to standardize clinical assessment and treatment using a treat-to-target approach. With any intervention, the hope is that the outcomes of everyone will improve, while the disparities diminish. The result of this approach, he said, was that, while there was overall improvement, the disparities remained essentially the same, suggesting that more needed to be done.
An analysis of data since 2020 showed an even more alarming picture: Almost all measures associated with JIA, including disease activity scores (cJADAS) and pain, spiked for non-Hispanic Black patients, but not non-Hispanic white patients. The difference seemed to be driven by patient perception, reflected in the patient global assessment of well-being and measures of physical function.
“We’ve taken these findings as a call to action,” Dr. Burnham said. “Our aim over the next 18 months or so is to decrease the cJADAS score in the whole population from 2.7 to 2.5 and, importantly, to decrease the disparity between non-Hispanic Black and non-Hispanic white patients by 50%,” by developing new clinic processes to support patients and caregivers, he said.
He said the hope is that there will be more efficient scheduling of appointments for at-risk patients and improvement at assessing patient-reported outcomes and overcoming barriers to care.
“We envision monthly that our coordinators and social workers will review patients with high disease activity and find patients without appointments,” he said.
This requires quality JADAS information and empowering clinicians to develop patient-specific plans on things like accessing medication and physical therapy, he said.
“We don’t know that cause yet (for the spike) and I think this is a really important area of research in the future,” Dr. Burnham said. “But these differences may be amenable to population-management approaches. And these differences, based on patient-reported outcomes, suggest an opportunity for improved assessment during visits.”
Thomas R. Collins is a freelance medical writer based in Florida.
References
- Knight A, Weiss P, Morales K, et al. Depression and anxiety and their association with healthcare utilization in pediatric lupus and mixed connective tissue disease patients: A cross-sectional study. Pediatr Rheumatol Online J. 2014 Sep 10;12:42.
- Fonseca R, Bernardes M, Terroso G, et al. Silent burdens in disease: Fatigue and depression in SLE. Autoimmune Dis. 2014;2014:790724.
