Adolescent patient involvement in discussions about relapsed or refractory cancer with oncology clinicians

Background: Adolescents with cancer report a strong desire to be actively involved in personal healthcare decision making. The purpose of this study was to examine adolescent cancer patients' involvement in conversations about relapsed and refractory disease, to characterize the content of patient-clinician communication, and to identify opportunities for improved patient-clinician communication.

Design/method: We analyzed audiotaped conversations between clinicians, parents, and adolescents with relapsed or refractory cancer. Of 36 conversations audiotaped for a larger study, 11 included adolescents ages 12 through 17 years.

Results: Adolescents were responsible for a mean 3.5% of total words spoken (range 0.6-10.0) in each discussion about relapsed or refractory cancer, whereas clinicians were responsible for 66.9% of total words spoken (range 39.5-87.1) and parents were responsible for 30.4% of total words spoken (range 10.9-59.1). Most clinician communication directed at the adolescent involved giving information (27.5%), engaging in social/personal conversation (21.2%), asking about medical history questioning (15.6%), and performing a clinical examination (15.4%). Adolescent communication directed at the clinician was predominantly classified as giving information in response to physician questioning (61.9%). In four of the 11 cases, clinicians sought adolescent opinions or preferences regarding next steps of care; adolescents only shared their preferences when asked directly.

Conclusions: Adolescent patient involvement in conversations about relapsed or refractory cancer is limited and often focused on responding to questions and participating in the history questioning and physical examination. Adolescents play a more active role in conversations about their cancer care when clinicians direct communication toward them. This study highlights opportunities for clinicians to actively engage adolescents in discussions about their medical care.