Challenging Outlook of Caring for Adolescents and Young Adults With Cancer in Brazil: Results of a Nationwide Survey

Abstract

PURPOSE The global burden of cancer in adolescents and young adults (AYAs) emerges as a major public health issue, in which remarkable challenges and unmet needs are evident. Because of sociodemographic inequalities, initiatives to change this scenario need to be expanded globally, particularly to low-middle–income countries (LMICs). This study aimed to gain information about the standards of AYA cancer care in Brazil from the physician's perspective. METHODS Physicians involved in AYA cancer care were invited to answer a national online survey. The questions covered several aspects from health care's demographics to specialized services availability, such as fertility and genetic counseling. The availability of a specialized AYA cancer care facility was the primary study end point, and the findings were stratified by region and treatment setting (public v private). RESULTS Among the physicians who responded (N = 249), 90% reported no access to a specialized AYA service. Only 20% had access to a fertility specialist, and 30% to a survivorship program in their institutions. Even external referrals to medical specialties were challenging, with 24% of the physicians reporting challenges. Despite the potential cardiotoxicity related to treatments, 43% of the respondents reported to refer patients for cardio-oncologists hardly ever. Furthermore, 36% of physicians had never enrolled AYA patients into clinical trials and 42% had never ordered a genetic test. Lack of specialized human resources was particularly evident in Northern Brazil, and delays in cancer diagnoses were frequent. CONCLUSION This first study addresses standards of AYA cancer care across Brazil. Importantly, the data disclose significant infrastructural gaps, implying that major investments in training and infrastructure are urgently needed. These data may mirror other LMICs reality.