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.
