Adolescent and Young Adult (AYA)
In 2020 approximately 70,000 young adults between the ages of 15 and 39 in the United States were diagnosed with cancer. While continued improvement has been seen in younger children and older adults, AYA patients have continued to lag behind in outcomes. The reasons for this are multifactorial and related to disease biology as well as a unique set of psychosocial needs. In order to address the disparity in outcomes seen in the AYA population, dedicated AYA programs are emerging throughout the country; however, not every institution or practice has the capability to form these multidisciplinary programs.
Resources
- ASCO Resource List for AYAs (2018): A downloadable set of resources that addresses some of the common concerns and issues faced by AYA patients including resources on fertility/sexuality, clinical trial enrollment, genetic testing, psychosocial needs including financial toxicity and peer support, as well as links to survivorship care recommendations. While these resources are generally applicable to the young adult age group, it is important to recognize that the needs of individuals at different ages (i.e., a 15-year-old versus a 39-year-old) may differ greatly.
- Adolescent and Young Adult Cancer Patient Needs Assessment: Based on the work of Drs. Bradley Zebrack and Olga Husson, to assess unmet psychologic needs of AYAs.
Publications
- Survivorship Needs of Adolescent and Young Adult Cancer Survivors: A Concept Mapping Analysis (2019): AYA cancer survivors have many unaddressed concerns as they transition out of active cancer treatment, largely related to developmental issues they are facing. Survivorship care for these patients would benefit from care planning that takes these unique concerns into account.
Older Adults
With the U.S. population becoming older, life expectancies rising, and cancer rates increasing, we will see more and more older adults who are survivors of cancer. The oncology world must prepare now to be able to effectively care for this population. There is increasing evidence supporting the use of geriatric assessment to address the unique care needs of older cancer patients including:
- understand the overall health status of the patient
- identify previously unknown health problems
- predict life expectancy of the patient
- predict tolerance of treatments
- influences treatment choices and discussions
- identify geriatric interventions that can improve treatment tolerability, compliance, HRQOL, and quality of life
Resources
- Screening Tools for Multidimensional Health Problems Warranting a Geriatric Assessment in Older Cancer Patients: an Update on SIOG Recommendations: The authors of this Annals of Oncology article sought to update the 2005 International Society of Geriatric Oncology’s (SIOG’s) recommendations for use of screening tools in older adults with cancer. They reviewed 44 studies on 17 geriatric screening tools. The article outlines recommendations for focusing future research on screening tools.
- ePrognosis: Considering prognosis for older patients is a key element of high-quality care. Doctors commonly use prognosis to make decisions about cancer screening, eligibility for hospice, and follow-up care recommendations, among other situations. ePrognosis is an aggregate of the various geriatric prognosis indices doctors use to educate themselves and their patients on specific prognoses. Doctors can use ePrognosis to choose an appropriate index for a patient, estimate mortality risk, interpret the results, and integrate those results into the patient’s care.
Publications
- Survivorship Care for Older Adults with Cancer: U13 Conference Report (2016): As evidence-based survivorship practices develop, addressing the unique needs of older adults is important and suggestions for how to meet these needs are provided.
- Cancer Survivorship Issues: Life After Treatment and Implications for an Aging Population (2016): Provides an overview of long- and late-term effects that older survivors of cancer can experience and offers guidelines for post-treatment care.
- Reach Out to Enhance Wellness Home-Based Diet-Exercise Intervention Promotes Reproducible and Sustainable Long-Term Improvements in Health Behaviors, Body Weight, and Physical Functioning in Older, Overweight/Obese Cancer Survivors (2012): This study found that cancer survivors who are older adults benefit greatly from diet and exercise interventions as part of their long-term survivorship care.
- Cancer Survivorship and Aging: Moving the Science Forward (2008): Older Adults are not frequently included in clinical trials due to several challenges. The article focuses on how to overcome these obstacles with new models of care so that cancer survivors who are older adults can receive the mental, social, and physical post-treatment care they need.
Sexual and Gender Minorities
More than 5% of the U.S. population identifies as lesbian, gay, bisexual, transgender, queer, or intersex (LGBTQI) – inclusively termed sexual and gender minorities (SGM). The lack of knowledge among healthcare professionals regarding the unique challenges faced by SGM populations impacts all aspects of cancer care including survivorship. Specifically, SGM populations often report (2011 Institute of Medicine Report and Burgess, Lee, Tran & Van Ryn, 2015):
- Experiencing discrimination and stigma
- Privacy concerns
- Invasive and inappropriate questioning
- Poor patient-provider communication
- Lack of provider awareness and sensitivity
- Unmet needs
Resources
- Enhancing Cancer Survivorship Among LGBTQ Individuals (2020): outlines three areas where LGBTQ patients and their caregivers may face challenges and how the Comprehensive Cancer Control Programs (CCCP) can address these needs.
- Cancer Care Consideration for Sexual and Gender Minority Populations (2019): summarizes clinical considerations across the cancer continuum of care and provides resources for providers.
- Addressing the Need for LGBTQI-Affirming Care: A Focus on Sexual and Gender Minority Prostate Cancer Survivor (2017): aims to help social workers and other health care professionals better support sexual and gender minority cancer patients, with a specific focus on the needs of sexual and gender minority prostate cancer survivors.
Publications
- Care Delivery, Patient Experiences, and Health Outcomes Among Sexual and Gender Minority Patient with Cancer Survivors: A Scoping Review (2019): characterize the literature on cancer care delivery, health outcomes, and health care experiences for patients with cancer and survivors identifying as SGM.
- Survivorship Care Needs Among LGBT Cancer Survivors (2018): survey results identifying the survivorship needs of LGBT cancer survivors.
- ASCO Statement: Strategies for Reducing Cancer Health Disparities Among Sexual and Gender Minority Populations (2017): outlines five areas of recommendation to address the needs of both SGM populations affected by cancer and members of the oncology workforce who identify as SGM.
- Lesbian, Gay, Bisexual, and Transgender (LGBT) Survivorship (2017): provides lesbian, gay, bisexual, and transgender (LGBT)-specific survivorship issues including integrating sexual and gender minority identities with cancer survivor identities; coordinating medical care and disclosing identities to health care providers; dealing with late effects of treatment; addressing LGBT family and relationship issues.
Rural and Medically Underserved Areas
While there is no single definition for the term, “rural,” recent estimates indicate approximately 57 million people (18% of total population) reside within 84% of the geographic area of the United States. Rural populations in the United States tend to be older, less educated, and have a slightly lower median household income. Cancer patients living in rural areas are diagnosed at later stages and, more recently, have been shown to suffer from relatively higher cancer-related mortality. Persistent issues with access to screening and treatment, as well as higher rates of behavioral risk factors, may be key contributors to this disparity. Transportation and insurance coverage issues exacerbate barriers to obtaining high-quality cancer care. Strategies to improve rural cancer care include removing barriers to teleoncology by addressing broadband access as well as payment policy issues, as well as improving access to research and participation in clinical trials among rural cancer patients. Additionally, the National Minority Quality Forum's (NMQF) Diverse Cancer Communities Working Group developed a framework to address cancer care disparities in medically underserved populations.