Abstract C017: The Patient COUNTS Study: Patient Cancer OUtreach, Navigation, Technology, and Support
Authors: Shariff-Marco Salma , Oh Debora , Tsoh Janice , Wong Ching , Allen Laura , Chu Janet , Bui Hoan , Liew Corina , Sun Angela , Cheng Joyce , Fung Lei Chun , Gomez Scarlett Lin , Nguyen Tung 
Published: September 2020

Background: While cancer is the most common cause of death for Asian Americans, many Asian American cancer patients do not receive appropriate treatment nor supportive care. The Patient COUNTS project aims to provide these patients and their caregivers with accessible, culturally-relevant, and linguistically-appropriate navigation resources that utilize technology to reduce disparities and improve quality of life. Methods: With feedback from a Patient Advisory Council and focus groups with cancer patients and caregivers, we developed a patient navigation program for Asian Americans that is currently being pilot tested with patients in Northern California. We are also developing an online patient portal that will enable newly diagnosed colorectal, liver, and lung cancer patients to access appropriate resources and virtual navigation. The portal and navigation will be available in English, Chinese (Cantonese/Mandarin), and Vietnamese, with ability to collect patient-generated health data (e.g., quality of life) and provide tailored resources and navigation. Results: We conducted 4 focus groups and 3 individual interviews with 17 participants in 4 languages (English, Mandarin, Cantonese, or Vietnamese). Key emerging themes include: 1) information unawareness or overload; 2) emotional support; 3) navigation needs; and 4) resource access. Participants with limited English proficiency often did not know to ask or what to ask for regarding their diagnosis or treatment. Some, however, were confused and overwhelmed by the amount of information from many sources. Receiving encouragement to fight cancer was described as crucial in their cancer care; family, friends, doctors, nurses or hospital staff were the primary sources of such emotional support. Although most participants were unfamiliar with navigation, they thought it was very desirable once an explanation was provided. Participants wanted information on symptoms and side effects management. They recommended providing information on sensitive topics (e.g., stigma, dying) only when asked by the patient. Access to information in both their native language and English are important for their comprehensive and communication with others. For participants with end-stage disease, information on palliative care and clinical trials should be provided. These findings guided the development of our patient navigation program to provide information on cancer, treatment, living with cancer, emotional well-being, resources (access to health care, financial, transportation, housing, food and nutrition, child/adult care). Conclusions: Our formative research found significant needs among Asian American cancer patients and suggestions for how to address those needs. Implementing the in-person pilot and online portal will enable us to identify key elements of an effective, sustainable, and disseminable navigation program for Asian American cancer patients and their caregivers.

Citation Format: Salma Shariff-Marco, Debora Oh, Janice Tsoh, Ching Wong, Laura Allen, Janet Chu, Hoan Bui, Corina Liew, Angela Sun, Joyce Cheng, Lei Chun Fung, Scarlett Lin Gomez, Tung Nguyen. The Patient COUNTS Study: Patient Cancer OUtreach, Navigation, Technology, and Support [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr C017.