"I'm the one taking it": adolescent participation in chronic disease treatment decisions

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.