Barriers to Care and Opportunities for Improvement: Adolescents and Young Adults with Cancer in Central America,Mexico,the Caribbean,and Peru

Abstract

Background:

Little is known about the barriers to care and resources needed for adolescents and young adults (AYAs, 15–39) with cancer in low- and middle-income countries, where most of these patients live. We aimed to address this gap through interviews with pediatric and adult hematologists/oncologists.

Methods:

We enrolled physicians from nine countries in Central America, Mexico, the Caribbean, and Peru. Semistructured interviews were conducted in Spanish, recorded, transcribed, and translated into English.

Results:

Twenty-eight respondents provided over 26 hours of data, and 46% were adult hematologists/oncologists. We identified multiple barriers in caring for AYA patients, including clinical, psychosocial, financial, and educational barriers. These include a lack of a multidisciplinary team focused on AYA patients, mental health support, a dedicated space for this patient population, high treatment costs, travel distance to the hospital, and discontinuity of care due to age limits. In addition, there are competing demands for resources with adult oncology, delays in diagnosis, and patients’ abandonment of treatment. Potential opportunities for improvement included having multidisciplinary AYA oncology teams, standardized treatment protocols, AYA-specific cancer registry, dedicated space, mental health support (e.g., support groups), improving access to health insurance, patient and physician education, and vocational assistance.

Conclusions:

This study identifies substantial barriers to the care of AYA patients with cancer in Central America, Mexico, the Caribbean, and Peru. It also highlights key areas for potential intervention to improve outcomes in this population. These key findings can guide cancer control programs in Latin America as they begin to include AYAs.