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Survivorship Care Throughout the Cancer Journey
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Survivorship Care Throughout the Cancer Journey

Don Champlain, MHA, RN, and Lucio Gordan, MD
Leaders at Florida Cancer Specialists discuss the cancer survivorship program they've created to meet the needs of their diverse population of patients.
The National Cancer Institute (NCI) describes cancer survivorship as a focus on the health and life of a person with cancer post treatment until the end of life. The survivorship experience encompasses the physical, psychosocial, and economic issues of cancer and includes family members, friends, and caregivers.1

An estimated 15.5 million cancer survivors are currently living in the United States. The projected number of cancer survivors is 20.3 million by 2026.2 Therefore, it is essential for practices to support the importance of survivorship and ensure that patients are offered services to help them navigate the multiple challenges related to cancer diagnosis, treatment, follow-up, and management of potential late physical complications, as well as nutrition, reengagement in workforce, psychological concerns, and financial considerations.

At Florida Cancer Specialists, we have created a survivorship program to meet the needs of our diverse population. We divide the program into 3 distinct phases: cancer diagnosis, cancer treatment, and life after treatment.

Survivorship Care Starts at Diagnosis

Many ask when to initiate survivorship and what services to provide. At Florida Cancer Specialists, we implement the first phase upon the diagnosis of cancer. We believe it is essential to introduce the concepts of survivorship early, which helps patients use the program most effectively as they move forward in the treatment phase and beyond.

The diagnosis phase includes the commitment to education about the disease and the latest treatment options available. This is also where we begin preparing patients for the future phases of survivorship, which include instruction about available resources and how to use them for the best possible outcomes.

One tool under development for patient education is a customized animated video about chemotherapy and its potential adverse effects. The video supplements face-to-face education with a nurse and physician, along with standardized and vetted written materials. Easy access to internet information sources means patient and families may be exposed to significant amounts of unrefined data, which may lead to confusion and anxiety about treatment plans. This video allows the patient to go back and review the physician and nurse instructions received during their initial education. Often, some family members do not live close to the patient, so the video allows them to share in the patient’s education, which better enables them to assist from a distance. The personal care manager can also use this as a teaching tool during active treatment.

Patients frequently share feelings of fear and anxiety at the time of their diagnosis. Giving appropriate attention to details during the diagnosis period of survivorship allows them to manage these emotions and prepare for the physical aspects of treatment, as well as, ultimately, post treatment.  

Allowing each patient to achieve success during this phase requires the services and collaboration of many team members, who provide the appropriate tools for this short but very important stage of survivorship.

Care Managers Are Key

The next phase begins with active treatment of the disease and can include intravenous and oral therapy, surgery, or radiation. Patients are assigned a team that includes the oncologist, care manager, pharmacist, clinic nurse, and nutritionist, among others.

A key factor in this phase is the assignment of a care manager. The care managers are experienced, oncology-certified registered nurses (RNs) who become liaisons for the patients during their active phase of treatment.

The goals of care management include managing the patient’s physical, psychosocial, and emotional needs. Our approach is patient-centered and holistic in nature, as we want to manage aspects of health of the whole patient and not just the physical symptoms of the disease.

One of the keys to success is the proactivity of the care managers. The nurses contact the patients based on the prescribed regimens and risk scores. For example, treatment regimens that are more emetogenic in nature will have closer follow-up by RN care managers. Standard operating procedures developed by our nurses, pharmacists, physicians, and advanced practice practitioners provide the information backbone, triggering when to contact the patients to reeducate them on how to manage any issue if or when it arises. We base the risk scores on multiple areas: the treatment regimen, patient’s performance status, and comorbidities. The care managers are experts in triage and, with the assistance of the treating team, manage patient symptoms very successfully, improving the overall experience and outcomes. Symptom management is guided by standard operating procedures.

One tool that makes this phase successful is the creation of an individualized care plan, which is based on the patient and his or her goals for treatment and eventual outcome and implemented by the care team. The care plan is created by team members and reviewed with the patient by the physician and care manager.

During this active phase, patients are also aided by 24/7 on-call nursing support. We use oncology-certified RNs to provide this service. Physicians are available for support as needed. This service has been shown to decrease the number of unnecessary emergency department (ED) visits, as well as hospitalizations.

Proper nutrition is a priority for survivorship patients at Florida Cancer Specialists during the active phase of treatment and beyond. We recognize the need for adequate nutrition to prepare patients for the treatments that lie ahead. We know that nutritionally sound patients have improved outcomes, and our physicians have committed the resources to make this a reality for our patients. Oncology-certified, specially trained nutritionists assist our patients during this phase of their journey, providing local resources to help meet individual nutritional needs. Study findings show the value of providing appropriate nutrition; a recent pilot project involving Medicare patients discharged from the hospital saved a health system $3.87 for every $1 spent on meals.3

Surveillance Leads to Savings

Although we often focus on the physical and emotional benefits of this phase of survivorship program, other positive aspects occur due to the increased attention. We have found that with appropriate surveillance of patients during and after treatment, ED visits and hospitalizations decrease. Within the first year of implementation of care management services, 1 insurer realized a 34% reduction in hospital days. We have also realized a 16% decrease in the number of hospital days for our Medicare population. We found that patients who go to the ED are frequently admitted, often resulting in a 3- to 5-day hospital stay. This adds up to large costs to society.

Finally, we reach what might be the most important phase of survivorship—life after cancer treatment. To begin with, the patient is assigned a personal survivorship coordinator, who creates an individualized plan of care to help the patient navigate the care to be delivered after the completion of treatment. Common issues in this phase include the ability to obtain healthcare coverage, follow-up treatment, late effects of treatment, secondary cancers, and quality of life. The coordinator is responsible for assisting with the patient’s physical, emotional, and psychosocial issues, as well. A primary goal in this phase is to help the patient find their new normal after cancer treatment. It often surprises patients that they will never be exactly as they were before cancer. We assist them on this journey of discovering who they are after cancer.

During this phase, we educate the patient about the importance of follow-up care. Very often in the first year, follow-up appointments are scheduled every 3 months. With some diagnoses, specific scans and labs are ordered per national guidelines. The survivorship coordinator will not only help the patient schedule these tests but also encourage making the appointments to ensure improved outcomes.

With the assistance of the physician and care team, the survivorship coordinator will address late-term adverse effects. Unfortunately, in some cases, the patient’s cancer will recur, and this continued relationship with the survivorship coordinator allows them to get scheduled with their original oncologist and care manager and more quickly begin the next stage of treatment.

We also maintain a focus on nutrition post treatment. The nutritionists assist the patient with a meal plan designed to meet their specific needs after completing active treatment. This is especially important because many people assume that all cancer patients need to gain weight after treatment, but sometimes the opposite is true. The plan of care must include the proper nutrition education that meets the patient’s unique needs, based on their particular type of cancer post treatment.

At Florida Cancer Specialists, we created this final phase to match the active phase of survivorship as closely as possible. We offer the same services, including the 24/7 on call, to give patients a sense of security, although they are no longer being seen as frequently as they were during their active phase. This is where the survivorship program fills a much-needed gap in care. We slowly help patients regain control of their health and life after cancer treatment by being available, but we give the patient the responsibility to call if they need assistance.

Through years of experience, we have found that survivorship benefits all patients, regardless of age, gender, financial status, or cultural background. Survivorship is an important part of a patient’s cancer journey. All phases are important and signify a different step along the path to completion of treatment and life beyond. As medical professionals continue to progress in the treatment, the number of survivors will continue to grow, as will the need for quality survivorship programs to support them.  

 
AUTHOR INFORMATION

Don Champlain, MHA, RN, is director of Care Management at Florida Cancer Specialists. He is accountable for all aspects of care management and oversees the Nutrition, Social Work, and Central Triage departments. A registered nurse, he has a master’s of science in Health Care Administration from Oklahoma State University.
Lucio N. Gordan, MD, is head of Quality and Medical Informatics for Florida Cancer Specialists. He is board certified in medical oncology, hematology, and internal medicine and practices in the Gainesville Cancer Center. A graduate of State University of Londrina College of Medicine in Brazil, he completed residency at the University of Iowa and a fellowship in hematology and medical oncology at the University of Florida in Gainesville.

Lucio N. Gordan, MD, is head of Quality and Medical Informatics for Florida Cancer Specialists. He is board certified in medical oncology, hematology, and internal medicine and practices in the Gainesville Cancer Center. A graduate of State University of Londrina College of Medicine in Brazil, he completed residency at the University of Iowa and a fellowship in hematology and medical oncology at the University of Florida in Gainesville.
 
References

 1. National Cancer Institute. NCI dictionary of cancer terms. NCI website. cancer.gov/publications/dictionaries/cancer-terms/def/survivorship. Published May 15, 2015. Accessed July 13, 2018.
2. Miller KD, Siegel RL, Lin CC, et al. Cancer treatment and survivorship statistics, 2016. CA Cancer J Clin. 2016;66(4):271-289. doi: 10.3322/caac.21349.
3. Martin SL, Connelly N, Parsons C, Blackstone K. Simply delivered meals: a tale of collaboration. Am J Manag Care. 2018;24(6):301-304.

 
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