JMIR Publications

ABSTRACT

Background:

Asian American patients have reported unique needs and barriers related to cancer care. While patient navigation can facilitate care coordination and help address barriers to care, in-person navigation is time and resource intensive. Virtual patient navigation and online supportive care tools can extend the benefits of patient navigation to more patients, especially those with non-English language needs.

Objective:

We aimed to develop, implement, and test an online portal providing virtual navigation including access to resources in English, Chinese, and Vietnamese for Asian American patients with newly diagnosed colorectal, lung, or liver cancer.

Methods:

The Patient COUNTS portal was built on a secure, HIPAA-compliant, cloud-based platform. We recruited adults 21+ years old with a recent diagnosis of stage I-IV colorectal, lung, or liver cancer; who identified as Asian American; spoke either English, Cantonese, Mandarin, or Vietnamese; and resided in the Greater San Francisco Bay Area. Participants were assigned a language-concordant navigator who assessed their needs and provided tailored resources and support over 6 months through the online portal. Participants completed baseline, 3-month, 6-month, and user experience surveys. We report descriptive statistics on sociodemographic characteristics, quality of life, and user experiences. We used generalized estimating equations (GEE) to analyze repeated measures of quality of life (total FACT-G and each subscale score separately).

Results:

The online portal included 1) a public-facing landing page; 2) a navigator interface; and 3) a participant interface, which were all available in English, Chinese, and Vietnamese. Among 51 participants, 92% and 96% completed the 3- and 6-month surveys, respectively. The mean age was 58 years (SD=13) with 73% men, 65% speaking English, and 39% having less than a college education. Half (51%) had colorectal, 41% had lung, and 8% had liver cancer. The average total FACT-G score was 73.0 (SD=17) at baseline, 73.2 (SD=17) at 3 months, and 75.1 (SD=19) at 6 months. In GEE models, participants reported an increase in emotional well-being at 6- months compared to baseline (Coefficient=0.99, 95% Confidence Interval 0.01-1.97). Among the 47 participants who completed the user experience survey, some (45%) had technical issues with the portal, but most reported that the program was culturally appropriate (94%), calls from the navigators were helpful (74%), and would recommend the program to others (74%).

Conclusions:

This multi-lingual virtual patient navigation program for Asian American cancer patients was deemed as culturally appropriate and helpful in our pilot study. Emotional well-being improved among users of the portal. Some participants reported technical challenges, but most were satisfied with the program. Lessons learned were used to improve portal features and usability for a follow-up expansion study of breast cancer patients from multiple racial and ethnic groups. Language-concordant virtual patient navigation and online supportive care tools can extend the reach and benefits of patient navigation. Clinical Trial: The study was registered with the National Institutes of Health Clinical Trials Registry (NCT03867916).