ASPO Abstracts
The Patient COUNTS Study: Patient Cancer OUtreach, Navigation, Technology, and Support
Category: Culture and Cancer
Conference Year: 2021
Abstract Body:
Purpose of the study: To reduce disparities and improve quality of life, the Patient COUNTS study
leverages technology to provide Asian American cancer patients with accessible, culturally-relevant,
and linguistically-appropriate navigation support and resources.
Methods: With feedback from a Patient Advisory Council (PAC), focus groups and interviews with 17
cancer patients and caregivers, and an in-person pilot test with 26 cancer patients, we developed an
online patient portal that enables Asian American patients with newly diagnosed colorectal, liver, or
lung cancer to access virtual navigation and relevant resources in English, Chinese
(Cantonese/Mandarin), and Vietnamese languages.
Results: We identified 4 key emerging themes: 1) information unawareness/overload; 2) emotional
support; 3) navigation needs; and 4) resource access. While some participants did not know who to
ask or what to ask for regarding diagnosis or treatment, others were confused and overwhelmed by
the amount of information from many sources. Receiving encouragement to fight cancer was
described as crucial; family, friends, doctors, nurses or hospital staff were sources of emotional
support. Although most participants were unfamiliar with navigation, after an explanation they thought
it was very desirable. Lessons learned from the pilot are congruent with the recommendations from
focus groups and PAC, which included providing information in native language and English on:
symptoms and side effects management; palliative care and clinical trials for patients with end-stage
disease; and sensitive topics (e.g., stigma, dying) only when the patient asks. The pilot highlighted
housing and food insecurity needs.
Conclusions: Our formative research found a range of significant needs among Asian American
cancer patients and suggestions for how to address them. This guided the development of our virtual
patient navigation program to provide information on cancer, treatment, living with cancer, emotional
well-being, and resources (access to health care, financial, transportation, housing, food and nutrition,
child/adult care). This will enable us to further identify key elements of an effective, sustainable, and
scalable navigation program for Asian American cancer patients and their caregivers.
Keywords: patient navigation Asian Americans quality of life