Abstract A64: The impact of language barriers and immigration status on the care of Hispanic pediatric cancer patients.
Authors: Fluchel Mark N. , Kirchhoff Anne , Gwilliam Vannina , Montenegro Roberto , Kinney Anita 
Published: August 2014

Abstract
Hispanics are the fastest growing minority group in the U.S. and childhood cancer treatment centers care for an increasing number of these patients. For Spanish-speaking families, language and cultural barriers may impact patient care and the families' experience within the medical system. We compared Spanish and English speaking caregivers' perspectives on the medical care experienced during childhood cancer treatment and report on whether immigration status affected decisions about their child's care.
We administered N=46 (72-item) Spanish and N=323 (48-item) English-language surveys to the primary caregivers of patients diagnosed ages 0-18 years with cancer, who were being treated at a university-based pediatric hospital. Survey domains included time from first symptoms to diagnosis, clinical trial status, satisfaction with care, measures of financial and emotional burden, and communication barriers. We compared our domains of interest for Spanish and English speaking respondents using chi-square and t-test statistics. Spanish speaking respondents were defined as anyone for whom Spanish was their self-reported primary language.
Most common cancer diagnoses were leukemia (40%), lymphoma (11%), sarcoma (12%), and brain tumor (11%). Median time since diagnosis was 24 months. Of Spanish speaking caregivers, 70% reported their legal status as undocumented. Over 65% of Spanish-speaking caregivers rated their ability to speak English as not well to not at all.
Mean time from onset of symptoms to diagnosis was 15 and 9.6 weeks for Spanish and English speakers, respectively (p=0.15). Of Spanish speaking respondents, 13% reported avoiding or delaying care due to immigration status.
Of Spanish and English speaking respondents, 70% and 40%, respectively, reported being enrolled in a clinical trial, (p=0.007). However, upon verification of enrollment status, 32% and 12% of these Spanish and English speaking respondents were incorrect (p=0.005). Twenty-two percent of Hispanic respondents, and 28% of undocumented caregivers, reported their immigration status affecting their decision to enroll in a clinical trial.
As measured on a Likert scale (0-100), Spanish speakers felt that the potential side effects of therapy were explained less well than English speakers (mean 86 vs. 95, respectively, p=0.002). Yet, the Spanish speaking participants were more satisfied with their child's overall care (mean 97 vs. 92, p=0.01). Perception of financial and emotional burden of treatment did not differ.
Of all Spanish speakers, 37% reported that they felt they were not fully understood by the oncology staff, with 22% reporting that they have falsely claimed understanding due to embarrassment over not speaking English. Lastly, 11% reported being uncomfortable asking for an interpreter while 33% felt that their child would have received better care if English were their first language.
In conclusion, language barriers and the immigration status of caregivers may impact the care of pediatric cancer patients due to delays in seeking care, the inadequate communication of treatment risks, and the reluctance of caregivers to admit misunderstandings. Many families, especially those who primarily speak Spanish, are poorly informed about whether or not their child is enrolled on a clinical trial, suggesting that the consent process is inadequate in this population.
Citation Format: Mark N. Fluchel, Anne Kirchhoff, Vannina Gwilliam, Roberto Montenegro, Anita Kinney. The impact of language barriers and immigration status on the care of Hispanic pediatric cancer patients. [abstract]. In: Proceedings of the Fifth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2012 Oct 27-30; San Diego, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2012;21(10 Suppl):Abstract nr A64.