Putting Adolescents and Young Adults in a Room Together: Launching an Adolescent and Young Adult Oncology Council.

Purpose: This article describes the formation and first meeting of a community adolescent and young adult oncology council (AYAOC), which was created to promote patient and stakeholder involvement in research and programmatic initiatives within community-based cancer centers. Methods: The AYAOC (comprising patients/survivors, family members, researchers and clinicians) convened at a one-day workshop moderated by an Australian not-for-profit AYA cancer organization. The council shared and compared health care experiences and then identified and prioritized unmet health care needs. Workshop notes were analyzed using inductive content analysis. Results: AYAOC members identified similarities in their experiences of cancer care and priorities for improvement of the health care system. Peer connection and the creation of adolescent and young adult (AYA)-specific care facilities were identified as the most pressing needs for AYAs with cancer, closely followed by integration of complementary medicine into medical practice and government advocacy to improve the quality and consistency of AYA cancer care delivery. Themes identified from AYAOC discussion included emotional isolation, naivety with and sometimes distrust of the medical system, the lasting impact of cancer on identity, the need for emotionally safe interactions with both individual clinicians and groups of peers, and the desire to take personal action to improve care for future patients. Conclusion: AYAOC members expressed a drive to share their experiences, advocate for others, and improve health care services for the "next generation" of AYAs diagnosed with cancer. Sharing stories and connecting with peers may have personal value for individuals. Channeling the altruistic energy of AYAs and stakeholders into group advisory and advocacy efforts also has value for health care systems, allowing stakeholder insights to inform clinical service delivery and research priorities.

Use of a Smartphone Application for Prompting Oral Medication Adherence Among Adolescents and Young Adults With Cancer

OBJECTIVES: To explore the feasibility and acceptability of use of a smartphone medication reminder application to promote adherence to oral medications among adolescents and young adults (AYAs) with cancer.
. SAMPLE & SETTING: 23 AYAs with cancer from a Children's Oncology Group-affiliated children's hospital and a National Cancer Institute-designated comprehensive cancer center in Salt Lake City, UT.
. METHODS & VARIABLES: Participants were asked to use the application for eight weeks. Data on application usage were obtained from a cloud-based server hosted by the application developers. Weekly self-report questionnaires were completed. Feasibility was assessed through participants' usage and responses. Acceptability was assessed through participants' perceived ease of use and usefulness.
. RESULTS: Almost all participants used the application at least once. More than half reported that they took their medications immediately when they received reminders. Participants also reported that the application was easy to set up and use, and that it was useful for prompting medication taking.
. IMPLICATIONS FOR NURSING: Nurses could continue to test the efficacy of integrating e-health modalities, such as smartphone applications, into efforts to promote medication adherence.