Abstract Objective: We aimed to develop a telehealth network to deliver postdiagnosis cancer care clinical services and education to American Indian and Alaska Native patients, their families, and their healthcare providers. We also sought to identify the challenges and opportunities of implementing such a telehealth-based application for this rural and underserved population. Materials and Methods: We followed a participatory formative evaluation approach to engage all stakeholders in the telehealth network design and implementation. This approach allowed us to identify and address technical and infrastructure barriers, lack of previous experience with telehealth, and political, legal, and historical challenges. Results: Between September 2006 and August 2009, nine tribal clinics in Washington and 26 clinical sites in Alaska had participated in the telehealth network activities. Network programming included cancer education presentations, case conferences, and cancer survivor support groups. Twenty-seven cancer education presentations were held, with a total provider attendance of 369. Forty-four case conferences were held, with a total of 129 cases discussed. In total, 513 patient encounters took place. Keys to success included gaining provider and community acceptance, working closely with respected tribal members, understanding tribal sovereignty and governance, and working in partnership with cultural liaisons. Conclusion: The telehealth network exceeded expectations in terms of the number of participating sites and the number of patients served. Following a participatory formative evaluation approach contributed to the success of this telehealth network and demonstrated the importance of community involvement in all stages of telehealth system design and implementation.
American Indian/Alaska Native (AI/AN) patients are significantly less likely than non-Hispanic whites to receive guideline-concordant cancer care. Our objective was to examine cancer treatment decision making among AI/AN patients and their providers.
From 2011 to 2014, AI/AN cancer patients and their surgeons were identified through a hospital registry in Washington State. Patients were invited to participate in a mailed survey that queried socio-demographics, cultural affiliation, everyday perceived discrimination, and trust in providers. Both patients and surgeons were queried about decision-making quality (collaboration and satisfaction). The primary outcome was association between patient and provider assessments of decision-making quality. The secondary outcome was non-adherence to treatment.
Forty-nine patients (62% response rate) and 14 surgeons (37% response rate) returned surveys. Half of patients had not completed high school; 41% were living in poverty. Half of patients reported a strong tribal affiliation and most reported experiencing some form of discrimination. Patients endorsed high trust in surgeons and a high quality decision-making process; and surgeons' rated decision-making quality even more highly than patients did in every domain. Non-adherence to treatment recommendations was common (26%) and was significantly associated with lower patient-reported collaboration and satisfaction with decision making.
Given the importance of adherence to cancer treatment for survival, the many non-clinical reasons for non-adherence, and the currently demonstrated association between decision-making quality and adherence, it would be worthwhile to investigate how to increase AI/AN patient satisfaction with decision making and whether improving satisfaction yields improved adherence to the cancer treatment plan. Copyright ? 2016 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd.
Notes
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This study seeks to ascertain whether a culturally tailored art calendar could improve participation in cancer screening activities. We conducted a randomized, controlled calendar mail-out in which a Native art calendar was sent by first class mail to 5,633 patients seen at an urban American Indian clinic during the prior 2 years. Using random assignment, half of the patients were mailed a "message" calendar with screening information and reminders on breast, colorectal, lung, and prostate cancer; the other half received a calendar without messages. The receipt of cancer screening services was ascertained through chart abstraction in the following 15 months. In total, 5,363 observations (health messages n = 2,695; no messages n = 2,668) were analyzed. The calendar with health messages did not result in increased receipt of any cancer-related prevention outcome compared to the calendar without health messages. We solicited clinic input to create a culturally appropriate visual intervention to increase cancer screening in a vulnerable, underserved urban population. Our results suggest that printed materials with health messages are likely too weak an intervention to produce the desired behavioral outcomes in cancer screening.
This project is aimed at determining the feasibility and effect of using videoconferencing to deliver cancer-related pain management education and case consultation to health care providers in rural AI/AN communities.
The project provided four educational sessions and nine case conferences to health care providers at tribal clinics in Washington State and Alaska using videoconferencing with pain experts at the University of Washington. A cross-sectional, descriptive study design was used to survey the participating providers. Measures included satisfaction with the telehealth system and self-perceived competence in pain management.
Fifty-two providers from 11 sites attended the educational sessions. Ninety-three providers from 16 sites participated in the case conferences. Case conference participants scored significantly higher on perceived competence in treating pain compared with clinic providers who did not attend. Educational session participants and case conference participants both reported a high level of satisfaction with videoconferencing.
Telehealth is a feasible and effective way to deliver cancer-related pain management education and increase competence among rural health care providers.
A descriptive study was conducted to determine the information needs of American Indian (AI) and Alaska Native (AN) cancer survivors and assess satisfaction with and acceptability of telehealth support group services for cancer survivors in AI and AN rural communities. AI and AN cancer survivors were asked to complete the Telehealth Satisfaction Survey and two open-ended questions, one regarding information needs and one seeking comments and suggestions about cancer support group meetings. Thirty-two surveys were returned. Information about nutrition during treatment and treatment-related side effects were the most sought after topics. Participants valued the opportunity to interact with other AI and AN cancer survivors who also lived in remote locations and the usefulness of the information presented. The link with geographically distant survivors was valuable to participants as they felt they were no longer alone in their cancer experiences. Determining survivors' information needs provides meaningful topics for future support group education. Telehealth is a viable way to facilitate cancer support groups to AI and AN cancer survivors in rural communities.
