Cancer survivors are living longer and, with more than one-third of the American population experiencing a cancer diagnosis in their lifetime, it is critical to focus attention on the long-term needs of survivors. The development of comprehensive, equitable cancer survivorship programs requires an understanding of barriers experienced by underserved populations seeking follow-up care in order to maximize length and quality of life (QOL) of the most vulnerable survivors. People of lower socioeconomic status, those without health insurance or who are underinsured, many racial/ethnic minorities, and other medically underserved populations can experience greater obstacles in accessing and receiving high-quality survivorship care.
BARRIERS TO OPTIMAL SURVIVORSHIP
Achieving optimal health after cancer treatment can be difficult for any cancer survivor, but underserved populations are burdened by additional obstacles that may impede overall QOL during survivorship. These challenges include economic, psychosocial, medical system, and cultural barriers.
The economic impact of cancer on a patient and family can be significant and sometimes devastating.1 Individuals who are poor and members of medically underserved groups often have shorter survival rates and a lower QOL.2 The American Cancer Society estimates that survival rates of poor individuals are 10% to 15% lower than those of more affluent cancer patients.3 The Institute of Medicine (IOM) reports that insurance status, perhaps more than any other economic factor, determines the time-liness and quality of healthcare, if it is received at all.4 The lack of adequate and affordable health insurance to cover cancer-related care has serious negative consequences, including sometimes debilitating debt for the uninsured and their caregivers.
Psychosocial barriers to optimal survivorship care are common among underserved populations and include fear, stigmatization, and inadequate social support. According to the IOM,3 cancer survivors from medically underserved communities may be especially helpful at destigmatizing the disease and providing social support, yet support services and programs rarely use these survivors as role models within their own communities. Eliminating fear and embarrassment among survivors and changing their attitudes, beliefs, and knowledge are challenging tasks given the level of medical mistrust, fatalism, and risk of recurrence in underserved populations.3
Medical management barriers such as ineffective patient–healthcare provider communication, fragmentation and lack of coordination in the delivery of healthcare, and late/long-term effects point to the need for an improved system of follow-up care for cancer survivors. One major component of effective survivorship care is coordination between specialists and primary care providers to ensure that all of the survivor’s health needs are met.2 As the number of survivors grows and their length of life increases, long-term health issues specific to cancer survival become a critical public health concern.3 Late and long-term effects of cancer treatment sometimes go unnoticed without standardized guidelines in place. Comprehensive follow- up care for survivors should include both monitoring and assessment of persistent and late effects of cancer and its treatment and appropriate interventions to prevent or mitigate adverse effects.1 Lack of information on how to best meet the healthcare needs of this growing population points to the need for clinical trials to evaluate effective strategies to manage posttreatment care.2
Cultural barriers also can influence receipt of services and quality of service provision in the survivorship period. Culture can shape profoundly how a person reacts to, judges, and interprets suggestions from his or her healthcare providers regarding medical care. Cultural barriers may include linguistic differences, as well as attitudes and beliefs about health and illness that may conflict with treatment or supportive care recommendations or that perpetuate distrust or misunderstanding of the medical system. Providers sometimes fall short of addressing patient education needs appropriately, which can be exacerbated further by differences between physician and patient assumptions regarding the body and the mind.5 To address the challenges posed by cultural barriers, bidirectional education between patients and providers is critical. Because cultural factors ultimately affect both the delivery and receipt of quality care, providers should be trained and proactively attempt to understand the impact of these cultural factors on an individual patient’s healthcare values, attitudes, beliefs, emotions, knowledge, and behaviors.4
A CANCER SURVIVORSHIP ROUNDTABLE
Ample research documents the greater burden of chronic diseases that disproportionately affect medically underserved populations.6,7 The George Washington University Cancer Institute’s Center for the Advancement of Cancer Survivorship, Navigation and Policy (GWCI caSNP) was established in 2009 to reduce health inequities among cancer patients by providing support for patient navigation and cancer survivorship programs and by providing objective policy analysis on the impact of national health reform on cancer care.
Recently, GWCI caSNP hosted a roundtable discussion for leading researchers, clinicians, and health policy experts to exchange information on current survivorship programs and research practices and to share ideas about newdirections for the field. Participants were selected on the basis of their contributions to the fields of cancer survivorship and health policy, as well as their aptitude for problem solving and innovation. Roundtable participants’ leveraged information shared at a symposium focused on survivorship research and health disparities conducted on the previous day, which presented new findings on medical care patterns of cancer survivors, psychosocial concerns of survivors, and survivorship issues relevant to ethnic minorities. The roundtable focused on the necessary resources and measures needed to forward the field of cancer survivorship, as well as recommendations to consider for future cancer survivorship research.
Necessary Resources and Measures
Survivorship care may necessitate a change in how medical care is delivered routinely. It is imperative, therefore, that research is conducted, resources are available, and measures are in place to establish efficient, effective, sustainable models of survivorship care for underserved populations.
Panelists concurred that research is needed to provide an evidence base for survivorship care across all communities. Some participants suggested that after this evidence base is accumulated, researchers could focus their efforts on exploring how to disseminate and replicate these results in specific underserved populations. Other participants expressed concern that a lack of upfront focus on the diverse needs of special populations when establishing an evidence base for survivorship care would result in the perpetuation of unequal care among the currently underserved. Panelists agreed universally that projects must include rigorous evaluation. In addition, evidence-based treatment models from other fields, such as mental health and HIV/AIDS, could be referenced when implementing and testing survivorship care models that address a diversity of needs and approaches.
Financial support from funding organizations is critical to establish efficient, effective, sustainable models of survivorship care for underserved populations. Several participants identified the difficulty of incorporating survivorship care into traditional cancer care. At many institutions, survivorship care is an “extra” rather than an essential component of cancer care. Grants to support pilot survivorship programs can provide the initial resources and time needed for institutions to demonstrate the importance and effectiveness of new models of care.
Roundtable participants discussed the need for policies that support survivorship research and clinical care. For example, the Com prehensive Cancer Care Improvement Act, H.R. 1844 and S.1773, which was introduced in the House and Senate in 2009, provided coverage for comprehensive cancer care planning services under the Medicare program.8 The legislation also included a Medicare payment demonstration project for symptom-management services and included grants for palliative care and symptom- management programs, provider education, and related research.8
In 2010, comprehensive health reform legislation was signed into law by President Obama. The law is intended to expand health insurance coverage while reforming the healthcare delivery system to improve quality and value. It also includes provisions to help eliminate disparities in healthcare, strengthen public health and healthcare access, invest in the expansion and improvement of the healthcare workforce, and encourage consumer and patient wellness in both the community and the workplace. Contingent on implementation of the law, access to affordable, quality care should be improved for many Americans over the next few years. The American Cancer Society has identified approximately 160 provisions in the health reform package that will impact directly the millions of Americans who have or will face cancer.9
Future Research Directions
To create actionable steps as a result of the discussion, participants were separated into 3 groups for a summative session. Each group addressed 1 of 3 primary areas needed to forward survivor-ship research to address health in equities. The 3 areas of focus were identified based on the cumulative information shared during the symposium and roundtable discussions and included (1) improved physician–patient communication; (2) transition from active care; and (3) late effects of cancer care. The below illustrates the groups’ findings, which were presented in the form of requests for proposals.
SAMPLE REQUESTS FOR PROPOSALS (RFPS)
Priority Area: Physician–patient communication
Rationale: Communication can impact quality of life (QOL) and survivorship, as well as end-of-life and palliative care.
- Studies should follow patients from diagnosis forward to study effective communication models.
- Research should explore communication challenges associated with primary literacy and health literacy.
- Academic–community partnerships are preferred.
Priority Area: Transition from active care
Rationale: Transition from active care into surveillance can be accompanied by high levels of anxiety for the patient. The patient can become “lost in transition.”
- Studies should measure QOL, access to survivorship care, service utilization, biological test of anxiety level, and/or access to social, family, and emotional support.
- Cost-effectiveness and comparative effectiveness research are encouraged.
- Studies should stratify results across different racial/ethnic groups, partner with communitybased care settings and include an advocacy component.
Priority Area: Late effects of cancer care
- Studies should focus on physiologic measures, symptom reduction, QOL, or reduction in mortality and might target cardiac disease, lymphedema, bone disease, neurocognitive deficits, or second cancers.
- Comparative effectiveness research of different monitoring schedules and their impact on effectiveness of treatment or survival is encouraged.
The panel proposed the following guidelines for cancer survivorship research to begin to reduce health and QOL inequities among different survivor populations:
- Use community-based research designs to incorporate insight from the population(s) under study.
- Develop cultural-specific communication methods and evaluation tools to test and use in underserved populations.
- Prioritize research to improve physician– patient communication and patient-centered care.
- Improve cultural competence among healthcare professionals through research and training.
- Invest in research on the outcomes and comparative effectiveness of navigation models, survivorship care planning, and survivorship program models.
- Invest in research to develop evidencebased management of cancer survivors and guidelines for survivorship care planning.
To put this research agenda into practice, strong advocacy is needed from healthcare professionals, patients, and caregivers to support funding for more comprehensive, patient-centered program development. Enhanced and dedicated funding from grantmaking organizations is critical to support cancer survivorship research to reduce inequities in health and healthcare access of different populations. Researchers should incorporate suggestions from and build collaborations with community organizations, clinicians, and other research institutions to create efficient, well-designed research that can be translated to the clinical environment rapidly. Finally, financial incentives by third-party payers to encourage thedevelopment of appropriate, coordinated, patient-centered survivorship care for all populations will speed the translation of research findings into clinical care. As the global cancer survivor population continues to grow, an aggressive and adequately funded research agenda is needed to ensure that every cancer survivor has the opportunity to enjoy high QOL after treatment.
The authors thanks the following individuals who provided critical insight: Keith Argenbright, University of Texas Southwestern/ Moncrief Cancer Resources, Dallas, Texas; Kimlin Ashing-Giwa, City of Hope Comprehensive Cancer Center, Duarte, California; K. Scott Baker, Fred Hutchinson Cancer Research Center, Seattle, Washington; Rebecca Beauregard, George Washington University Department of Health Policy, Washington, DC; Lydia Buki, University of Illinois at Urbana- Champaign, Urbana, Illinois; Lisa Campbell, Center for Health Disparities Research at East Carolina Uni versity, Greenville, North Carolina; Craig Earle, Ontario Institute for Cancer Research, Toronto, Ontario; Brian Garofalo, Pfizer Oncology, New York, New York; Mark Gorman, National Coalition for Cancer Survivorship, Silver Spring, Maryland; Amy Hanley, American Society of Clinical Oncology, Alexandria, Virginia; Caroline Huffman, Lance Armstrong Foundation, Austin, Texas; Linda Jacobs, University of Pennsylvania Abramson Cancer Center, Philadelphia, Pennsylvania; Diana Jeffery, Department of Defense, Falls Church, Virginia; Lorenzo Norris, George Washington University Medical Faculty Associates, Wash ington, DC; Karen Syrjala, Fred Hutchinson Cancer Research Center, Seattle, Washington; Kathleen Wall, DC Cancer Consortium, Wash ington, DC; Armin Weinberg, Baylor College of Medicine, Houston, Texas.
The GWCI Cancer Survivorship Research and Health Disparities Symposium was made possible through the support of the EagleBank Foundation and LIVESTRONG. The Survivor - ship Research Roundtable was made possible through the support of Pfizer Inc and the Pfizer Foundation. While preparing this article, the authors received salary support in part by a grant to the GWCI and Department of Health Policy from the Pfizer Foundation’s Global Health Partnerships Program and Pfizer Inc.
- Ganz PA. Cancer Survivorship: Today and Tomorrow. New York, NY: Springer Science + Business Media; 2007.
- Hewitt M, Greenfield S, Stoval E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press; 2006.
- Haynes MA, Smedley BD, eds. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: National Academies Press; 1999.
- Smedley BD, Stith AY, Nelson AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare. Washington, DC: National Academies Press; 2002.
- Luquis RL, Perez MA. Cultural Competence in Health Education and Health Promotion. Hoboken, NJ: Jossey-Bass; 2008.
- Diez Roux AV, Mair C. Neighborhoods and health. Ann N Y Acad Sci. 2010;1186:125-145.
- Russell BE, Gurrola E, Ndumele CD, et al; for the Community Health and Academic Medicine Partnership Project. Perspectives of non-Hispanic Black and Latino patients in Boston’s urban community health centers on their experiences with diabetes and hypertension. J Gen Intern Med. 2010;25:504-509.
- H.R. 1844—111th Congress: Comprehensive Cancer Care Improvement Act of 2009. GovTrack.us (database of federal legislation). 2009. www.govtrack.us/congress/bill.xpd?bill= h111-1844. Accessed May 23, 2011.
- American Cancer Society Cancer Action Network. The New Health Care Reform Law Through the Cancer Lens: Key Provisions Affecting Cancer Patients and Survivors. March 30, 2010. http://acscan.org/pdf/healthcare/implementation/ HCR-cancer-provisions.pdf. Accessed May 23, 2011.