Original article“I'm the One Taking It”: Adolescent Participation in Chronic Disease Treatment Decisions
Section snippets
Sample
Participants were recruited from a large, academic children's hospital. We approached patients with JIA or CD, for whom TNF-αi therapy had been considered, and who were ages 11–18 when their parent participated in a related study on parent decision-making [17]. Parents had been identified through local disease registries and provider referrals. Parents were eligible if they had considered TNF-αi treatment in the past year, were English-speaking, and the patient did not have a comorbid diagnosis
Results
We interviewed 15 adolescents, 7 with CD and 8 with JIA. Of the remaining five potential participants, two declined to participate and three, for logistical reasons, were unable to be scheduled. Participants' median age at the time of the decision was 13 years (Table 1). For all participants, the initial decision was to initiate treatment with TNF-αi. However, by the time of our interviews three participants had discontinued or were considering discontinuing that treatment. There were no major
Discussion
Our study provides an in-depth view of adolescents' perceptions of their roles and needs in chronic disease treatment decisions. By focusing on their experiences with a real-life decision, the initiation of treatment with TNF-αi, we were able to get specific, concrete perspectives that may augment more broad-spectrum preferences reported in studies investigating hypothetical scenarios or more general, day-to-day preferences [14], [15], [31], [32]. Additionally, the use of pie charts was a novel
Acknowledgment
This work was supported by an Academic Pediatric Association Young Investigator Award to Dr. Ellen Lipstein.
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