Unmet Information Needs Among Hispanic Women With Thyroid Cancer

Abstract

Background: Despite thyroid cancer being the second most common cancer in Hispanic women, little is known about access to and utilization of medical information resources by Hispanic women with thyroid cancer. Methods: Hispanic women who had diagnoses of thyroid cancer reported to the Los Angeles Surveillance Epidemiology and End Results (SEER) registry in 2014-2015, and who had previously completed our thyroid cancer survey in 2017-2018, were offered follow-up surveys in both English and Spanish (N=273; 80% response rate). Acculturation, which is the process by which individuals adopt the language, values, attitudes, and behaviors of a different culture, was assessed with the Short Acculturation Scale for Hispanics (SASH). Health literacy was assessed with the validated single-item question of “How confident are you filling out medical forms by yourself?” with response categories based on a five-point Likert scale from “extremely” to “not at all”. Patients were also asked about their internet access, information resources used, and ability to access medical information about thyroid cancer in their preferred language. We generated descriptive statistics for all categorical variables and used Rao-Scott adjusted chi-square tests to test for a relationship between level of acculturation and the following variables: health literacy, internet access, information resources used, and ability to access information. Results: Participants’ median age at diagnosis was 47 years (range 20-79); 49% were low-acculturated, 25% had low health literacy, and 14% reported no internet access at home. Low-acculturated Hispanic women reported using information resources in both English and Spanish whereas high-acculturated women used resources in English only. Hispanic women were more likely to report the ability to access medical information about thyroid cancer all of the time if they preferred information in English compared to if they preferred it in Spanish (89% vs 37%, P<0.001). Low-acculturated (vs high-acculturated) Hispanic women were more likely to have low health literacy (47% vs 5%, P<0.001) and to report use of in-person support groups (42% vs 23%, P=0.006). Depending on their level of acculturation, Hispanic women accessed the internet differently (P<0.001) such that low-acculturated women were more likely to use only a smartphone (34% vs 14%) or have no internet access (26% vs 1%), and less likely to use both a smartphone and home computer/tablet (28% vs 58%) or use only a home computer/tablet (10% vs 21%). Conclusion: Our findings demonstrate that low-acculturated Hispanic women with thyroid cancer have greater unmet information needs and access information differently compared to high-acculturated Hispanic women. This study emphasizes the importance of a patient-focused tailored approach to providing medical information to this understudied population.