Abstract

Several national reports and many individuals in the clinical oncology community have defined the adolescent and young adult (AYA) cancer population as individuals diagnosed between the ages of 15 and 39. However, neuroscience and developmental research have identified important decision-making skills (e.g., information processing, reasoning, emotion regulation) that are not fully developed during adolescence, making general, AYA-focused doctor-patient interaction guidelines potentially questionable for the adolescent cancer population. Most studies include adolescents in samples of pediatric cancer patients or include adolescents in samples of young adult cancer patients, but studies rarely consider adolescent cancer patients as a distinct, developmentally unique group. A systematic literature review was undertaken in October 2014 to begin to understand what is known about the doctor-patient relationship and communication preferences within adolescent oncology. From the 25 included studies, three important conclusions emerged: (1) discrepancies among adolescent patients, parents, and providers about the desired extent of involvement in treatment-related decisions; (2) patient desire for developmentally and culturally appropriate information provision; and (3) the desire and preference for how information is delivered, with recognition that these preferences may change with age. There was some variation in themes by study design, with studies directly observing medical consultations reporting less adolescent involvement in discussions than studies that surveyed doctors. The results of this review support the need for developmentally focused research and clinical guidelines that emphasize the experience of adolescent cancer patients separate from their older and younger counterparts.

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