Barriers to Implementing Successful Survivorship Programs
Teachable Moment
When a person is diagnosed with cancer, many healthcare professionals utilize this pivotal medical touchpoint for a teachable moment. It is an opportune time to educate about reevaluating priorities and making lifestyle changes that will help lead to improved overall health. Cancer treatment across the healthcare continuum has evolved into a complex and multidisciplinary team approach versus sole medical care.
Many cancer survivors have a longer survival times as medical technology and cancer treatment outcomes have improved. Paying close attention to the long-term and late effects of cancer treatment, as well as the survivors’ other medical concerns, is critical for those with curative, recurrent or persistent disease.
In addition to the treatment itself, oncology team members need to focus on helping to improve the function and quality of life of survivors who suffer from persistent symptoms and side effects during acute cancer treatment and at each additional pivotal medical treatment.
In the past, peer-to-peer support groups were the primary way for survivors to receive psychosocial support and communicate their needs.1 Research and providing ongoing survivorship care emerged through public awareness to help define this paradigm.
Support to Help Implement Survivorship Services
Many professional organizations have generated attention and paved the way to develop models for structuring survivorship programs to be holistic, based on the survivor’s full scope of needs. The Livestrong Foundation, National Coalition for Cancer Survivorship (NCCS), the Oncology Nursing Society (ONS), the American Society of Clinical Oncologists (ASCO), the American Cancer Society (ACS), and National Cancer Institute (NCI) office of cancer survivorship helped generate increased public awareness and advocated to promote research directed specifically at the unique needs of cancer patients.2 These organizations have used this research to help develop formal survivorship programs.
The Institute of Medicine report in 2006 recommended that cancer survivorship programs should be a distinct phase of cancer care and that delivery of appropriate care ensues.3 The report also recommended that survivors receive a comprehensive care summary with follow-up plans that are clearly and effectively explained.2
The Commission on Cancer (CoC), a national accrediting body, mandates Standard 3.3, Survivorship Care Plan, to improve compliance by medical professionals to ensure cancer survivors are getting comprehensive communication about their diagnoses, treatment, prevention, and how to address late effects of their cancer treatment.4
Barriers to Implementation of Survivorship Services
Despite the support from various national organizations, accrediting bodies and passionate healthcare professionals, these standards present multiple challenges to successful implementation. These are multifactorial and include both individuals and institutions.
• Providers and physicians lack of survivorship knowledge and needs
A study at Henry Ford reported that 31% of providers were uncertain as to what medical interventions are recommended for preventing or remediating morbidities associated with common cancers.5
• Lack of survivorship training
In the Henry Ford study, 61% of providers were uncertain about their role in follow-up care (surveillance) for the most common types of cancer.4
• Lack of institutional resources
o Staffing shortages
o Decreased administrative support for clinicians providing survivorship care
o Lack of designated clinical time allocated for cancer survivorship programming
Over 40% of providers, in the Henry Ford study, thought they did not receive timely information about changes in their patients’ cancer status, medications or treatments, despite having access to the health system’s EMR.4
• Decreased access to care and resources
Only 35% of providers, in the Henry Ford study, felt that the psychosocial needs of their patients were being met.4
More than 90% of NCI-Designated Cancer Centers providing clinical care did not have easily identifiable patient-focused descriptions or links to cancer rehabilitation services on their website.6
• Lack of evidenced-based models and guidelines
• Decreased financial resources
o Lack of knowledge about how to take advantage of reimbursement opportunities to support survivorship care programming
o Lack of funding
• Survivor culture and ethnic beliefs and fears can influence cancer treatment and ability to receive survivorship care services
o Age, race, and ethnicity can impact survivor perceptions of social support and cancer survivorship in specific populations and can hamper ability to provide complete care.1
Solutions to Implementing Successful Survivorship Care Programs
Research shows that there will be an insufficient number of trained oncology medical providers and primary care physicians to cover the needs of an increasing number of cancer survivors, therefore creating a significant barrier to successful survivorship care.5 As medical shortages develop, it is important to work as a multidisciplinary team to be sure that survivorship care is coordinated and timely in order for the survivors to benefit from these specialty services.
• Educate oncologists and primary care providers regarding the complex needs of cancer survivors from diagnosis to end of life for confident survivorship care and appropriate and timely referrals to survivorship services.
• Support oncologists and primary care providers to provide coordinated care with formal patient care assessments for successful transition from cancer care back into overall health focus.
• Identify oncology team members who are knowledgeable to screen and facilitate discussions for triaging to specialty services. (i.e. nursing, navigation, support team leader, primary care provider with specialty in disease states).
• Develop evidenced-based clinical practice guidelines and assessment tools to support teams implementing survivorship care plans to ensure the plans are efficient and reproducible.
• Improve patient and family education and self-advocacy both within the community and within our systems.
• Push for uniform reimbursement for all survivorship services for counseling, nutritional interventions, and therapies. Utilize reimbursable services to support non-reimbursable services.
Evolving With a Brighter Perspective
Receiving a cancer diagnosis is devastating for survivors and their loved ones. Receiving education and resources in advance of their treatment helps them anticipate what they may encounter on their cancer journey. Knowing that they have a full multidisciplinary team to support them along that journey to help validate and alleviate their discomfort, anxiety, and fear is the best that we can provide as a healthcare team.
Standards and guidelines have been implemented by accrediting bodies and organizations to help support busy and ever-changing healthcare systems to be sure that we are putting our patients first. As a healthcare industry, we have come a long way, but in terms of consistent coordinated patient-centered care, we continue on the journey.
References
1. McCollum,K, Identifying barriers to cancer survivorship programs, www.oncologynurseadvisor.com.Jan/Feb 2012;Oncology Nurse Advisor
2. Institute of Medicine of the National Academies. From Cancer Patient to Cancer Survivor: Lost in Transition: report recommendations. http://iom.edu/~/media/ Files/Report%20Files/2005/From-Cancer-Patient-to-CancerSurvivor-Lost-inTransition/recommendations.pdf. Accessed January 17, 2012
3. Deline M. The Advisory Board: Oncology Rounds. The CoC clarifies the survivorship care plan standard: what you need to know. April 25, 2016. https://www.advisory.com/research/oncology-roundtable/oncologyrounds/2014/09/the-coc-clarifies-the-survivorship-care-plan-standard-what-you-need-to-know. Accessed Feb. 4, 2017.
4. Shulman LN, Jacobs LA, Greenfield S, et al. Cancer care and cancer survivorship care in the United States: will we be able to care for these patients in the future? J Oncol Pract. 2009;5(3):119-123. doi:10.1200/JOP.0932001.
5. Advisory Board, Oncology Rounds. Primary Care Providers Uncertain about Role in Survivorship; May 15, 2010
6. Silver JK, Raj VS, Fu JB, et al. Most National Cancer Institute-designated cancer center websites do not provide survivors with information about cancer rehabilitation services. J Cancer Education. 2017 Jan 7.doi: 10.1007/s13187016-1157-4. [Epub ahead of print]