Abstract
Introduction: Hispanic/Latino lung cancer patients typically present at a more advanced stage and are less likely to undergo surgical resection. Prior studies have identified multiple barriers for seeking diagnostic work-up though few studies have focused on difficulties encountered in navigating the health care system. Our study aim was to identify obstacles experienced by Hispanic/Latino patients in accessing timely lung cancer care, as well as the strategies employed to overcome these obstacles.
Methods: We conducted semi-structured individual interviews with Hispanic/Latino patients diagnosed with lung cancer to explore their comfort with health care professionals, perceptions about barriers to care, and the process by which they made treatment-related decisions. We analyzed the data through thematic text analysis. Four coders independently summarized the data for conceptual themes focusing on challenges overcome in accessing care, and solutions to address these barriers. The coders then met to reach consensus on overall themes describing perceived difficulties in access to care and strategies used to surmount such barriers.
Results: Participants were 24 Stage I-IV Hispanic/Latino lung cancer patients (79% female, ages 20-87, M=63 years), treated at a tertiary cancer center, equally divided as primary English and Spanish speakers. As expected, they reported experiencing multiple patient-, provider-, and health care system-level barriers to cancer care. Patient-level barriers included difficulties understanding providers' recommendations, comprehending medical jargon, lack of knowledge about lung cancer treatment options, emotional distress, and being overwhelmed which led to denial of diagnosis and confusion about treatment options. Provider-level barriers included providers overlooking symptoms, and lack of detailed explanation about lung cancer symptoms, disease course, and treatment options. Health care system level-barriers included fragmentation with lack of continuity of care, variable primary care provider (PCP)-patient relationships, use of numerous primary care facilities resulting in gaps in medical history and current health status, disagreement among providers about optimal treatment, and PCPs' referrals to multiple specialists, all leading to delayed diagnosis and access to treatment. Strategies devised to address barriers to care included: using family members as patient advocates and cultural brokers to help patients access providers, navigate the health care system, schedule appointments, determine the best treatment course, and translate physician discussions; and being assertive to pursue more responsive providers and specialized cancer treating facilities, seeking second opinions, asking providers to clarify treatment options and explain medical jargon, independently researching effective treatments, and finding creative solutions to finance care. Surprisingly, ability to pay for care was rarely perceived as being an obstacle for accessing cancer care. No significant differences were found between primary Spanish and English-speaking participants regarding barriers to care and solution strategies.
Conclusions: Hispanic/Latino lung cancer patients identified successful strategies in overcoming barriers to accessing specialized cancer care. Future studies on improving the cultural competence and communication skills of the healthcare workforce, involving family caregivers, and patient navigation are warranted.
Citation Format: William Alago, Elyse Shuk, Ana-Motta Moss, George Brandon, Abraham Aragones, Idalid Franco, Roberto Valentin, Mutiat A. Akinsemoyin, Melissa Rodriguez, Hector Velez, Tyler Barretto, Uriel Castaneda, Jamie Ostroff. Hispanic/Latino lung cancer patients overcoming barriers for accessing cancer care: A qualitative study. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr C47. doi:10.1158/1538-7755.DISP13-C47