Patients, Caregivers Weigh Disease, Treatment Risks When Deciding to End JIA Therapy
Click Here to Manage Email Alerts
Among patients with well-controlled juvenile idiopathic arthritis, and their caregivers, when and how they decide to discontinue treatment likely depends on whether they are more concerned with disease- or treatment-related complications, and often involves a “trade-off” between these competing risks, according to survey findings published in Arthritis Care & Research.
“We lack robust data about whether, and how, children and young adults with well-controlled juvenile idiopathic arthritis can safety stop treatment,” Daniel D. Horton, MD, MSCE, of Rutgers Robert Wood Johnson Medical School, told Healio Rheumatology. “Without high-quality evidence to guide decisions about withdrawing treatment, shared decision making can be especially important. However, clinicians, patients and families may not agree on what is most important when deciding whether to stop anti-rheumatic therapy. This is the first study to examine the perspectives of patients and caregivers about stopping medicines for well-controlled JIA.”
To analyze how patients and caregivers decide to discontinue treatment for well-controlled JIA, Horton and colleagues conducted a mixed-methods study based on semi-structured phone interviews. Participants included 20 patients aged 13 years or older with JIA, as well as 24 caregivers, all of whom were mothers of patients, recruited from social media and flyers in pediatric rheumatology clinics.
Among the included patients, half were younger than 18 years, while half of all caregivers were the parent of a patient aged 10 years or younger. All were selected purposely to reflect a range of demographic, geographic and education backgrounds. Interviews were approximately 30 to 45 minutes long, and included open-ended questions regarding their experiences with JIA, treatment and any factors that would impact any medication-related decisions, focusing specifically on inactive disease and discontinuation. The researchers used Fisher’s exact testing to analyze characteristics associated with high levels of concern regarding JIA or treatments.
According to the researchers, participants who reported more concern regarding their disease were more likely to report JIArelated complications (P = .002) and were more motivated to continue treatment. Interviewees who reported more concern about treatment issues were more likely to report drugrelated complications (P = .04) and were more willing to discontinue.
In addition, participants described the impacts of their disease and treatments on with their sense of normalcy and safety. They also expressed guilt and regret regarding previous or potential adverse events and spoke about the uncertainty and unpredictability of future harms. Participants also considered the trust they had in rheumatologists and other information sources, including family and online support groups.
“When JIA is well-controlled, doctors can ask patients and caregivers whether they would feel safer and more normal by continuing treatment or by stopping treatment,” Horton said. “Doctors might find it helpful to ask about their level of concern with hypothetical outcomes, such as treatment complications before stopping medicines or future flares after stopping medicines. A better understanding of patients' and caregivers' priorities and perceived trade-offs will help improve shared decision-making around JIA treatment withdrawal.” – by Jason Laday
Disclosure: Horton reports research support from CARRA and Bristol-Myers Squibb. Please see the study for all other authors’ relevant financial disclosures.
Collapse
Read more about
Click Here to Manage Email Alerts