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Majority of patients, caregivers report barriers in JIA medication adherence
Nearly two-thirds of patients and caregivers identified at least one adherence barrier to treatment for juvenile idiopathic arthritis, according to survey data published in the Journal of Rheumatology.
The researchers noted that systematic screening with a standardized tool could help providers identify factors that create barriers to adherence for patients with JIA, and establish benchmarks for future adherence in clinical practice.
“Despite the large burden caused by complex therapy recommendations for children and families with JIA, screening for barriers to adherence is currently not standard of care,” Leslie Favier, MD; Janalee Taylor, MSN, APRN, CPNP; and Esi Morgan, MD, MSCE, all of the Cincinnati Children’s Hospital Medical Center, told Healio Rheumatology. “This initiative is the first time that a systematic method to assess barriers to adherence in pediatric rheumatology has been designed and tailored for use in our special population.”
To establish and implement standardized tools to identify adherence barriers for patients with JIA at seven rheumatology clinics, and to determine how frequently barriers are present, the researchers devised an iterative program using coproduction among parents and health care providers. The resulting Barriers Assessment Tool was used to screen for barriers to adherence of four treatment modalities — oral medications, injectable medications, infusions, and physical and occupational therapy.
The researchers tested their tool among 578 parents or guardians and 99 patients, representing 44 guardian-child dyads, at seven clinics within the Pediatric Rheumatology Care and Outcomes Improvement Network. Responses were recorded for analysis.
According to the researchers, 77% of parents or guardians, and 70% of patients, reported facing at least one barrier to adherence across all treatment modalities. The most common barriers included worry about future consequences of therapy, pain, forgetfulness, side effects and embarrassment related to the therapy. Patients generally agreed with parents and guardians in identifying barriers.
“The majority of patients and families identified at least one barrier to adherence, which has potential to negatively impact clinical outcomes if not addressed by providers,” the researchers told Healio Rheumatology.
Favier, Taylor and Morgan added that implementing tools to screen adherence barriers will “support patients, families and providers in delivery of self-management services to improve the quality of care delivered.”
“It is imperative that patients and families living with chronic disease learn to effectively manage their disease,” they said. “We hope that by providing a tool that can rapidly screen for medical regimen barriers and burden, we will help facilitate meaningful conversations for the patients and treatment teams to optimize care.” – by Jason Laday
Disclosure: The researchers report funding from the the Center for Education and Research on Therapeutics.