Evaluating the Impact of a Patient Family Advocate for Latino Families With Non-English Language Preference in the Pediatric Oncology Setting: A Process Paper

Abstract

Background

Non-English language preference (NELP) is a major barrier to accessing and navigating the U.S. health care system and exacerbates health disparities. Patient family advocates historically serve as health educators, cultural liaisons, and system navigators. A Spanish NELP advocate has worked at a large pediatric hematology and oncology program for several years, but the impact and specific tasks of the role had not been examined.

Method

An evaluation process was developed to (a) examine the role's potential impact on Spanish NELP families’ enrollment in treatment studies compared to non-Spanish NELP families; (b) review patient experience survey responses; and (c) compare survivorship data for children with cancer from Latino, White, and non-Latino families of color.

Results

Spanish NELP families enrolled in research studies more frequently than non-Spanish NELP families and refused study enrollment the least. Spanish NELP families had higher survey response rates but were less satisfied. Latino children with cancer treated at the health system had lower 5-year relative survival compared to their White peers locally and nationally, but Latino children with leukemia had better relative survival than their national peers.

Discussion

The high enrollment in research studies and higher than national leukemia survival rates suggests that the advocate may contribute to outcomes, but more insight into patient experience and relative survival rates of Latino children is warranted. Expanding the number of advocates with updated position qualifications, enhancing advocate documentation, adding reimbursement potential, and improving compensation are recommendations to further develop the role.