Impact of rurality on melanoma diagnosis in Utah.

AIM: To analyze trends in Utah melanoma diagnosis and study the impact of rurality. PATIENTS & METHODS: State-wide melanoma incidence was calculated using Surveillance, Epidemiology, and End Results data (2005-2013). A subset of 5199 patients treated in an integrated healthcare system was further stratified for urban or rural residence. RESULTS: Early-stage tumors accounted for most of the increase in melanoma incidence over time. Age-adjusted melanoma incidence rate was higher in rural counties (46.7 vs 39.4). Anatomic site and stage did not differ between rural and urban patients. Rural patients were more commonly diagnosed by a local primary care provider. CONCLUSION: Rurality had an impact on melanoma diagnosis in the specialty and location of the diagnosing provider.

Effective stakeholder engagement: design and implementation of a clinical trial (SWOG S1415CD) to improve cancer care.

BACKGROUND: The Fred Hutchinson Cancer Research Center has engaged an External Stakeholder Advisory Group (ESAG) in the planning and implementation of the TrACER Study (S1415CD), a five-year pragmatic clinical trial assessing the effectiveness of a guideline-based colony stimulating factor standing order intervention. The trial is being conducted by SWOG through the National Cancer Institute Community Oncology Research Program in 45 clinics. The ESAG includes ten patient partners, two payers, two pharmacists, two guideline experts, four providers and one medical ethicist. This manuscript describes the ESAG's role and impact on the trial. METHODS: During early trial development, the research team assembled the ESAG to inform plans for each phase of the trial. ESAG members provide feedback and engage in problem solving to improve trial implementation. Each year, members participate in one in-person meeting, web conferences and targeted email discussion. Additionally, they complete a survey that assesses their satisfaction with communication and collaboration. The research team collected and reviewed stakeholder input from 2014 to 2018 for impact on the trial. RESULTS: The ESAG has informed trial design, implementation and dissemination planning. The group advised the trial's endpoints, regimen list and development of cohort and usual care arms. Based on ESAG input, the research team enhanced patient surveys and added pharmacy-related questions to the component application to assess order entry systems. ESAG patient partners collaborated with the research team to develop a patient brochure and study summary for clinic staff. In addition to identifying recruitment strategies and patient-oriented platforms for publicly sharing results, ESAG members participated as co-authors on this manuscript and a conference poster presentation highlighting stakeholder influence on the trial. The annual satisfaction survey results suggest that ESAG members were satisfied with the methods, frequency and target areas of their engagement in the trial during project years 1-3. CONCLUSIONS: Diverse stakeholder engagement has been essential in optimizing the design, implementation and planned dissemination of the TrACER Study. The lessons described in the manuscript may assist others to effectively partner with stakeholders on clinical research.

Supporting Adolescents and Young Adults with Cancer: Oncology Provider Perceptions of Adolescent and Young Adult Unmet Needs.

Few studies have assessed oncology providers' perceptions of adolescent and young adult (AYA) cancer patients' unmet needs. In this statewide survey (N = 91), we found that most providers recognize the financial, insurance, and late effects needs of their AYA cancer patients. However, employment, education, behavioral health, sexuality, and social and family issues were endorsed by less than half of providers as areas where AYAs needed assistance. Few providers felt that their AYA cancer patients had unmet needs for these same concerns. Educational efforts are needed to improve providers' awareness of the impact of cancer for AYA cancer patients.