Original article
“I'm the One Taking It”: Adolescent Participation in Chronic Disease Treatment Decisions

https://doi.org/10.1016/j.jadohealth.2013.02.004Get rights and content

Abstract

Purpose

To understand adolescents' roles and preferences in chronic disease treatment decisions, using biologic therapy decisions as an example.

Methods

We conducted semistructured interviews with adolescents who have Crohn's disease (n = 7) or juvenile idiopathic arthritis (n = 8). Questions focused on biologic therapy decisions, including who participated, preferred roles, and factors considered in the decision. We used pie charts to help teens describe the division of decisional responsibility. We open-coded the initial interviews to develop a coding structure. Interviews then were coded by two people, with disagreements resolved through discussion. Interviews were analyzed using content analysis.

Results

Nearly all adolescents participated in the decision about biologic therapy. Roles varied from telling parents about specific symptoms to having the final say in the decision. In addition to discussing their own roles, adolescents identified specific decision-making roles for both parents and physicians. Most factors that influenced adolescents' decision-making related to their quality of life, such as the desire to feel better, concerns about painful injections, and the time needed for treatment. Some adolescents did consider potential side effects and the expected treatment efficacy. Most adolescents were satisfied with how the decision was made, but given a choice would have preferred a different role in the decision.

Conclusion

Adolescents with chronic disease wish to be involved in treatment decision making, but also seek the involvement of parents and physicians. Parents and providers can assist by providing adolescents with relevant information and by helping teens develop the skills necessary for future medical decision-making.

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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