Summary. Cancer is the most common cause of death for Asian Americans, but many Asian American cancer patients do not receive appropriate treatment or survivorship care. To better address their needs, we will develop and test a culturally and linguistically tailored navigation program, Patients COUNTS. We will enroll 150 Asian American men and women recently diagnosed with colorectal, liver, or lung cancer. We will work with an Advisory Council comprised of members from the community and healthcare settings to ensure our platform is culturally relevant. Bilingual patient navigators will help patients: obtain appropriate clinical care, assist with logistical needs (e.g., transportation), and provide other support to address emotional, social, and stress-related needs. Patient COUNTS will use a multilingual (English, Chinese, Vietnamese) web-based patient portal to provide access to virtual or in-person patient navigation, cancer information and resources, and to assess patient-reported outcomes.
Asian Americans are the fastest growing racial group in the U.S. Two-thirds of Asian Americans speak a language other than English at home, and 31% do not speak English very well. Cancer is the most common cause of death for Asian Americans, but many Asian American cancer patients do not receive appropriate treatment or patient-centered survivorship care.
According to the Pew Internet Survey, Asian Americans were the most prolific users of the internet among all racial/ethnic groups, and use continues to increase over time among all sociodemographic groups. The 2016 California Health Interview Survey (adult questionnaire) data for Asian Americans in San Francisco show that 72% of Chinese and 85% of Vietnamese reported using the internet for health or medical information in the past year. In a prior case-control study of breast cancer among Asian Americans in the Bay Area, we found that 84% of breast cancer patients and 80% of controls reported using the internet daily or several times a week, and 66% of patients and 59% of controls reported that they would complete a health survey online. Although internet usage and willingness to complete a health survey online declined with increasing age, the rates were still high at 70% and 45% among those ages 56 and older among breast cancer patients and controls, respectively. In another prior study, we tested the use of an ecological momentary assessment (EMA) approach to collecting survey data from Asian American breast cancer patients and controls using short online surveys administered frequently over time to capture real-time exposure data, limiting issues with recall. This approach involved sending links via text of email to short online surveys on a periodic basis. All (100%) participants in this pilot test reported preferring this mode of research study engagement over traditional epidemiologic data collection approaches via telephone, in-person interviews, or mailed surveys.
Based on the community needs and findings from these surveys and preliminary studies, the Patient COUNTS Study will develop, implement, and evaluate an intervention to improve the quality of cancer care and support among Asian American colorectal, liver or lung cancer patients. Given the teams experience working with the Asian American community over the past 20 years, we expect that uptake and reception of using web-based platforms among Asian American cancer patients will be quite high. Thus, we feel that the time is right to test the feasibility and acceptability of a web-based program, focusing here on Chinese and Vietnamese patients, in addition to English-speaking Asian Americans.
The intervention, Patient COUNTS, is a patient-centered program that utilizes technology to identify newly diagnosed cancer patients, reaches out to them to offer information about cancer care, and, through navigation, helps patients obtain appropriate clinical care, assistance for logistical needs, and support for psychosocial stress. The Patient COUNTS intervention will use on-line communication tools such as a web-based patient portal and video conferencing to provide cancer information and resources, and patient navigation either virtually or in-person for these Asian American cancer patients who speak English, Chinese, or Vietnamese. We will assess the patient’s needs such as knowledge about guideline-based cancer treatment, logistical barriers, and psychosocial stress associated with cancer diagnosis. Either in-person or virtually, depending on the patient’s preference, we will be available to be present at the patient’s clinical visits to provide assistance as needed. We will provide patients access to curated online and community supportive services as needed to address issues raised by the patient. In addition, we will assess the feasibility of using the web-based patient portal to collect patient-generated health data on cancer survivorship outcomes including adherence to treatments, satisfaction with care, and quality of life.
The Patient COUNTS Study leverages the collective and synergistic expertise of a multi-disciplinary team comprising of community-based participatory researchers, clinicians, and cancer epidemiologists with two decades of experience collecting cancer data and conducting interventions with Asian Americans, and strong connections with community-based organizations and patient advocates. This innovative study will culminate in a culturally and linguistically appropriate cancer navigation program with great potential for adaptation and sustainability. The impact of the project on Asian American communities will be to: create a much-needed tool to coordinate medical and non-medical supportive services for Asian American cancer patients; connect them to community supportive services; and in the process of demystifying the treatment of cancer and providing practical solutions to problems associated with a cancer diagnosis, mobilize Asian American communities to confront the stigma and burden of cancer.
Study Sample. We plan to recruit a total of 150 patients through population-based recruitment of Asian Americans newly-diagnosed with colorectal, lung and liver cancer from the Greater Bay Area Cancer Registry (GBACR), a part of the statewide California Cancer Registry and the NCI Surveillance, Epidemiology, and End Results (SEER) Program. Eligible cases are defined as: self-identify as Asian American; age 21 or older; reside in one of the nine GBACR counties at time of diagnosis and interview; speak and read English, Cantonese, Mandarin, or Vietnamese; has not yet completed treatment (may have begun treatment); and is willing to participate in a study that lasts up to 7 months, in order to complete data collection activities after the 6 months of follow-up. Given the focus of the study on patient navigation through the cancer treatment phase, we will focus on patients diagnosed with stages I-III cancer. Eligible patients will also need to have access to the internet. Study measures will include shared decision-making, provider-recommended treatments, treatment status (initiation, adherence), reasons for discontinuing treatment, satisfaction with care, and health-related quality of life (including cancer specific concerns and side-effects). In addition, sociodemographic data on participants will be collected.
Why seeking support for an online engagement platform that will help enroll diverse study participants.
For this study, we would like to create a platform that will operate as a secured cloud-based system and will be HIPAA compliant. Participants will register with name, email and/or cellular telephone number, and will then be identified within the system by a unique Study ID number. There will be separate portals for each cancer site so that content can be tailored to the specific cancer site. We will develop the site in English, Chinese, and Vietnamese. Prior to implementation of the Patient COUNTS intervention, we will conduct usability testing of the online portal with members of our Advisory Committee. We will aim for a literacy level of 8th grade in all languages. The core content will be the same for all languages, but we will culturally target each language group by adapting graphics, examples, idioms, tone, and other relevant communication characteristics. Since English speaking Asian Americans can comprise over 30 different national origin groups, the amount of targeting will have to be limited to commonly shared elements. We will work with our diverse Advisory Council to delineate these elements.
We envision an online portal that will include the following features/capabilities: multilingual content (English, Chinese, Vietnamese); electronic consenting; self-administered brief surveys (15 minutes each) at baseline (enrollment), 3 months, and 6 months [topics will include treatment, shared decision making; health-related quality of life]; personalized report/feedback from surveys; reports to navigators; cancer and survivorship information; and links to a curated list of credible resources, including local, community-based ones.
Through our Advisory Council and using two decades of experience in conducting community-engaged research and patient-centered research with Asian American communities, we will identify the key issues related to cancer care for Asian Americans and approaches to provide assistance for those issues in order to create an intervention that is culturally, linguistically, and societally appropriate. Because of the stakeholder-driven approach, the possibility for sustainability is also higher, particularly as we will interact with the San Francisco Cancer Initiative (sfcancer.org), an innovative communitywide effort to reduce the effect of cancer and cancer disparities in the city and county of San Francisco.
The Patient COUNTS Study has been selected for funding from the Bristol Meyers Squibb Foundation with support for 3 years, with a study start date of July 1, 2018. Per the study timeline, we have 18 months to develop and test the online portal, and will implement the online navigation intervention and evaluation in the subsequent 18 months. Upon completion of the funded study, we expect the technological infrastructure to remain. This includes the web portal and any educational materials developed for the project. Other elements, particularly the multi-lingual aspect and the involvement of the navigator, will need support to be maintained. We anticipate that SF CAN will help with this. We will also work with healthcare systems to identify the possibility of support. In addition, we will seek to pursue the model established by the California Smokers’ Quitline, which is available in multiple languages and originally supported by research funding, but is now supported by a variety of funders including the California Department of Public Health, Centers for Disease Control and Prevention, and Centers for Medicare & Medicaid Services.
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