A recent study on disability in childhood-onset systemic lupus erythematosus (cSLE) reports that 41% of pediatric patients are affected by at least “mild disability.” A finding that Mary Beth Son, MD, director of the rheumatology program at Boston Children’s Hospital, says underscores the need for more research.1
“We take care of these kids day after day, year after year,” says Dr. Son, one of the study’s authors. “I think looking at what [affects] them on a day-to-day basis is really important and helpful … finding out how many kids actually feel they are being [affected] on a day-to-day basis, and what factors into [how they feel]. And all of that [is] in hopes of identifying targets we can hit as clinicians to improve their quality of life.”
Published this spring in Lupus, the study is based on 2010–2014 data from the Childhood Arthritis and Rheumatology Research Alliance (CARRA). During the study, the Childhood Health Assessment Questionnaire (CHAQ) was used to assess disability on a scale of 0–3, with 3 being the worst.1 The multivariate, logistic regression analytics identified an association of low annual income, arthritis and higher pain scores with disability at baseline.
Translating the Results to Practice
“One of the more interesting things we found is that higher pain scores do correlate with [increased] disability. I think that would be expected in an adult population, but it’s certainly borne out in the pediatric population, as well,” Dr. Son says. “I think focusing in on that [correlation] in a clinical visit and seeing if [the child is] in pain, and if so, what do we think is driving that pain in order to address it may improve the disability scores.”
For the finding associating disability with arthritis, Dr. Son encourages rheumatologists with pediatric patients to ask about that condition as well. She notes treatment options are available for these patients that can immediately help alleviate arthritis symptoms.
It’s important for rheumatologists to ask kids about their joint pain “and how much of their function they think [has] decreased due to joint pain,” she adds. “We do have medications that treat inflammatory arthritis, so focusing on that [need] and addressing it the best we can [may] also help decrease disability.”
Dr. Son encourages rheumatologists to ask “the right questions” to elicit information from pediatric patients about such issues as joint pain.
“Some kids willingly offer [information], and other kids [may] have learned to live with [the pain],” she says. “As pediatricians, we focus on function. So what’s impacting the child’s day-to-day function? Are there sports they want to play that they’re unable to? Are there other activities they’d like to participate in that they’re unable to?”
Another point to remember is that for a pediatric patient, participating in sports and school is as important as an adult rheumatology patient’s ability to earn a living, Dr. Son says.
“Lupus in childhood is a lifelong disease,” Dr. Son adds. “Give them the tools to participate fully and realize that [treatment] goal is important, so they don’t think they have to live with decreased function or a lot of pain. I think it’s important to address [this aspect] early on in the disease to give the kids an outlook that they’re going to live with their lupus. And we’re going to do the best we can to help them with that.”
Patient Access
The report’s finding on how low annual income affects pediatric patients means that rheumatologists also need to communicate with their patient’s parents or caregivers. Dr. Son says it’s important to ensure patients can get to their appointments, and if not, determine if transportation can be arranged another way.
“Are there ways we can help with that?” she asks. “Are they able to afford their [children’s] medications and the co-pays associated with those medications? Do we have our social workers working with them to ensure they have supplementary medical insurance to make sure medications are feasible? The medications we prescribe for pediatric lupus are potentially life saving, and it is really important to know if families are struggling financially. We need to make sure we are enabling full access to medications and healthcare visits.”
Dr. Son emphasizes that she believes most pediatric rheumatologists already take these steps. But she hopes her research helps “underpin the importance of it.” Additionally, for adult rheumatologists who are not exclusively focused on pediatric patients, she hopes the research brings attention to how disability relates to pediatric lupus. Dr. Son is further hopeful that more research establishing the association between disability and cSLE will lead to studies on quality outcomes in those patients that could lead to potential interventions.
“There’s a lot of work being done in regard to patient-recorded outcomes, both in pediatric lupus [and] across pediatric chronic diseases,” Dr. Son says. “And those kinds of studies will be quite important to hone in on exactly what’s impacting our patients on a day-to-day basis from their point of view.”
Richard Quinn is a freelance writer in New Jersey.
Reference
- Hersh AO, Case SM, Son MB, et al. Predictors of disability in a childhood-onset systemic lupus erythematosus cohort: Results from the CARRA Legacy Registry. Lupus. 2018 Mar;27(3):494–500.
