Addressing Disparities in Adolescent and Young Adult Oncology: A Multifaceted Approach

Author:
Vidya Puthenpura Section of Pediatric Hematology and Oncology, Department of Pediatrics, Yale School of Medicine, New Haven, CT

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Adolescents and young adults (AYAs) are defined by the NCI as individuals ages 15 to 39 years.1 Approximately 90,000 AYAs are diagnosed with cancer each year, and they have a 5-year relative survival of approximately 86%.1 However, due to longer time to diagnoses, more aggressive tumor biology, increased therapy toxicity, decreased participation in clinical trials, and barriers in access to age-appropriate care, outcomes for AYAs have not improved significantly compared with their adult and pediatric counterparts.1,2 The lack of comprehensive psychosocial support exacerbates the emotional and psychological burden on AYAs, who frequently juggle education, career, and family responsibilities alongside their cancer treatment.2 Reproductive and fertility-related health issues are also critical concerns, because many AYAs lack access to appropriate fertility preservation resources and counseling.3 Furthermore, lower clinical trial enrollment rates among AYA patients hinder advancements in treatment and survivorship outcomes for this population.3

These inequities are further exacerbated in disadvantaged AYAs who identify as racial and/or ethnic minorities, have lower socioeconomic status (SES), or reside in rural areas with decreased access to care and resources.3,4 Data from the SEER database indicates that although AYA cancer incidence rates are highest in non-Hispanic Whites, non-Hispanic Blacks experience the highest cancer mortality despite having a 25% lower incidence rate.4 Additionally, uninsured AYAs are more likely to present with advanced disease and poor prognoses.5 Financial insecurity and lack of insurance coverage often lead to delayed diagnoses and suboptimal treatment adherence.5 Social determinants of health (SDoH) also play a crucial role in shaping the disparities observed in AYA oncology care. Factors such as race and ethnicity, SES, access to transportation, medical literacy, and experiences of discrimination significantly influence patient outcomes.4 In the study by Henderson et al6 elsewhere in this issue, it was found that Hispanic and non-Hispanic Black AYA patients had significantly higher risks of mortality compared with non-Hispanic White patients, even after adjusting for covariates such as sex, age, cancer type, stage at diagnosis, and SES. These findings highlight the multifactorial nature of disparities in AYA oncology care, driven by both structural and individual-level factors.

The socioecological model for health, developed in the 1970s and widely used in public health, considers the interplay between individual, interpersonal, organizational, community, and policy factors, making it an ideal tool to address disparities in AYA oncology care.7 This model, shown in Figure 1, emphasizes comprehensive interventions that empower individual patients, engage families and communities, enhance healthcare systems, and advocate for policy changes, ultimately supporting equitable health outcomes.7

Figure 1.
Figure 1.

Multilevel approach to addressing disparities in adolescent and young adult oncology care.

Abbreviation: AYA, adolescent and young adult.

Citation: Journal of the National Comprehensive Cancer Network 22, 7; 10.6004/jnccn.2024.7062

Individual

AYAs, especially those from disadvantaged backgrounds, face numerous challenges at the individual level when navigating cancer care. Issues such as limited access to reliable information, difficulty understanding complex medical terminology, and the psychological burden of managing their health can significantly impact their treatment journey. Attempts to address these issues have included educational campaigns, peer support groups, and traditional patient navigation services. However, these efforts often fall short in providing personalized, attractive, and easily accessible support. Given that AYAs, including those from disadvantaged backgrounds, are identified as “digital natives” for their swift adoption of technological innovations, leveraging digital health solutions presents a promising and increasingly used approach.8 This can include a range of tools, including telehealth platforms to reach underserved and rural populations and utilizing artificial intelligence (AI)–powered patient navigation tools to provide personalized support, streamline care coordination, and improve patient education. Recent advances in AI have demonstrated the transformative potential to level the playing field in supportive care, offering intelligent systems that can guide patients through the complex web of cancer care with greater equity.9 Additionally, AI can support the development of culturally tailored outreach and education programs that address specific barriers faced by underserved groups, such as language differences, mistrust of the medical system, and lack of access to information.9 By integrating AYAs into the development of these interventions to ensure relevance, approachability, and efficacy, healthcare providers can ensure that AYAs from diverse backgrounds receive personalized, timely, and relevant information, enhancing their self-efficacy and participation in their care.8

Interpersonal

At the interpersonal level, promoting equity involves actively engaging family members in the treatment process by offering culturally sensitive counseling and support groups that are accessible to all socioeconomic backgrounds. Establishing connections with peers is essential, ensuring shared experiences and coping strategies are relevant and relatable.8 Comprehensive psychosocial support is crucial, and entails establishing dedicated support services for AYA patients, including mental health counseling, fertility preservation resources, and survivorship programs. Providing support in multiple languages and accommodating diverse cultural norms can further enhance inclusivity. These efforts help create a supportive network that acknowledges and addresses the unique challenges faced by marginalized AYA populations, fostering a more equitable care environment.

Organizational

AYAs are known to have decreased enrollment in clinical trials due to a lack of awareness and targeted outreach, limited availability of trials specifically for their age group, and barriers such as logistical challenges, eligibility criteria, and concerns about the impact on their daily lives and long-term health.5 It is imperative to include young AYAs patients in disease- and target-appropriate adult oncology trials. Additionally, there is a need to reevaluate FDA guidelines regarding the use of “adult” drugs in younger AYA populations. Improving clinical trial enrollment involves developing targeted outreach programs to increase participation among AYA patients, particularly those from minority and lower socioeconomic backgrounds, by leveraging partnerships with community partners. To increase AYA trial enrollment rates in cancer, particularly among underserved and marginalized demographics, it is essential to develop culturally tailored outreach and education programs that address specific barriers faced by these groups. Leveraging partnerships with community organizations can help bridge the gap, provide culturally sensitive and accessible information to underrepresented groups, thus fostering greater inclusion in clinical research.

Community

At the community level, addressing inequities in cancer care and outcomes involves implementing targeted outreach programs in schools, colleges, and community centers to raise awareness and provide resources, particularly in underserved areas.10 These programs should focus on education about cancer risks, early detection, and available treatment options, tailored to meet the specific needs of diverse communities. Partnering with local nonprofits, faith-based organizations, and community leaders can help identify and address specific needs.10 Concrete initiatives might include establishing community health worker programs where trained individuals from the community provide peer support, navigation assistance, and education about clinical trials and treatment options.10 Additionally, setting up mobile health clinics can bring cancer screening and care services directly to underserved neighborhoods, reducing the need for transportation and making it easier for AYA patients to receive timely care. Implementing telehealth programs can also bridge the gap for those in rural or remote areas, ensuring they have access to oncology specialists without the burden of travel.3,8,10 By collaborating with local organizations and leaders, these initiatives can be designed with community input to ensure cultural appropriateness, thereby effectively addressing specific barriers faced by marginalized groups, promoting equity, empowering communities, fostering trust, and improving health outcomes across diverse populations.

Policy

A key strategy on the policy level includes enhancing access to care by expanding insurance coverage and reducing financial barriers to ensure all AYA patients receive timely and appropriate care. According to recent studies, expanding insurance coverage significantly improves the likelihood of AYA patients receiving early diagnosis and treatment, which is crucial for better outcomes.5 Strengthening and maintaining the protections provided by the Affordable Care Act (ACA), such as allowing young adults to stay on their parents’ insurance plans until age 26 and prohibiting discrimination based on preexisting conditions, can ensure continuous and comprehensive coverage.5 Requiring insurance plans to cover comprehensive cancer care, including psychosocial support services, fertility preservation, survivorship programs, and palliative care, can ensure AYA patients receive holistic care that addresses all aspects of their well-being.3,5 Reducing financial barriers, such as high out-of-pocket costs, has been shown to decrease treatment abandonment rates and improve adherence to prescribed therapies.5 Furthermore, implementing policies that address these financial challenges can lead to increased participation in follow-up care and long-term survivorship programs, which are essential for ongoing health and quality of life in AYA cancer survivors.

In short, AYA oncology care is fraught with disparities driven by a complex interplay of biologic and social factors. Addressing these inequities requires a concerted effort from healthcare providers, researchers, policymakers, and the community. By leveraging interventions at multiple levels of society, we can work toward ensuring equitable care and improved outcomes for all AYA cancer patients. Future work should continue to explore the long-term impacts of SDoH on AYA oncology outcomes and focus on developing best practices for reducing disparities in cancer prevention, care, and survivorship.

References

  • 1.

    Coccia PF. Overview of adolescent and young adult oncology. J Oncol Pract 2019;15:235237.

  • 2.

    Juth V. The social ecology of adolescents’ cancer experience: a narrative review and future directions. Adolescent Res Rev 2016;1:235244.

  • 3.

    Beauchemin MP, Roth ME, Parsons SK. Reducing adolescent and young adult cancer outcome disparities through optimized care delivery: a blueprint from the Children’s Oncology Group. J Adolesc Young Adult Oncol 2023;12:314323.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 4.

    Rosenthal A, Duvall A, Kahn J, Khan N. Disparities in care and outcomes for adolescent and young adult lymphoma patients. EJHaem 2023;4:934939.

  • 5.

    Roth M, Berkman A, Andersen CR, et al. Improved survival of young adults with cancer following the passage of the Affordable Care Act. Oncologist 2022;27:135143.

  • 6.

    Henderson SD, Chun C, Cooper R. Evaluation of socioeconomic and racial/ethnic disparities in all-cause mortality in adolescent and young adult cancer patients. J Natl Compr Canc Netw 2024;22:447453.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 7.

    Bronfenbrenner U. Toward an experimental ecology of human development. American Psychologist 1977;32:513531.

  • 8.

    Puthenpura V, Marks AM. Clinical application of digital technologies in adolescent and young adult oncology supportive care. J Adolesc Young Adult Oncol 2021;10:127130.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 9.

    Wyatt KD, Alexander N, Hills GD, et al. Making sense of artificial intelligence and large language models–including ChatGPT–in pediatric hematology/oncology. Pediatr Blood Cancer 2024;71:e31143.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 10.

    Kale S, Hirani S, Vardhan S, et al. Addressing cancer disparities through community engagement: lessons and best practices. Cureus 2023;15:e43445.

Disclosures: The author has disclosed having no financial interests, arrangements, affiliations, or commercial interests with the manufacturers of any products discussed in this article or their competitors.

Correspondence: Vidya Puthenpura, MD, MHS, Section of Hematology and Oncology, Department of Pediatrics, Yale School of Medicine, 330 Cedar Street, LMP 2073, PO Box 208064, New Haven, CT 06520-8064. Email: vidya.puthenpura@yale.edu
  • Collapse
  • Expand
  • Figure 1.

    Multilevel approach to addressing disparities in adolescent and young adult oncology care.

    Abbreviation: AYA, adolescent and young adult.

  • 1.

    Coccia PF. Overview of adolescent and young adult oncology. J Oncol Pract 2019;15:235237.

  • 2.

    Juth V. The social ecology of adolescents’ cancer experience: a narrative review and future directions. Adolescent Res Rev 2016;1:235244.

  • 3.

    Beauchemin MP, Roth ME, Parsons SK. Reducing adolescent and young adult cancer outcome disparities through optimized care delivery: a blueprint from the Children’s Oncology Group. J Adolesc Young Adult Oncol 2023;12:314323.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 4.

    Rosenthal A, Duvall A, Kahn J, Khan N. Disparities in care and outcomes for adolescent and young adult lymphoma patients. EJHaem 2023;4:934939.

  • 5.

    Roth M, Berkman A, Andersen CR, et al. Improved survival of young adults with cancer following the passage of the Affordable Care Act. Oncologist 2022;27:135143.

  • 6.

    Henderson SD, Chun C, Cooper R. Evaluation of socioeconomic and racial/ethnic disparities in all-cause mortality in adolescent and young adult cancer patients. J Natl Compr Canc Netw 2024;22:447453.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 7.

    Bronfenbrenner U. Toward an experimental ecology of human development. American Psychologist 1977;32:513531.

  • 8.

    Puthenpura V, Marks AM. Clinical application of digital technologies in adolescent and young adult oncology supportive care. J Adolesc Young Adult Oncol 2021;10:127130.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 9.

    Wyatt KD, Alexander N, Hills GD, et al. Making sense of artificial intelligence and large language models–including ChatGPT–in pediatric hematology/oncology. Pediatr Blood Cancer 2024;71:e31143.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 10.

    Kale S, Hirani S, Vardhan S, et al. Addressing cancer disparities through community engagement: lessons and best practices. Cureus 2023;15:e43445.

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