Navigating Patients Diagnosed with Complex Gastrointestinal Cancers

January 2021 Vol 12, No 1 —January 22, 2021
Sari Francis, MSN, RN, CGRN
Complex GI Cancer Nurse Navigator
Methodist Healthcare | Powered by Sarah Cannon – The Cancer Institute of HCA Healthcare
Veronica Campos, DNP, MSN, RN, NE-BC, OCN
Division Director of Navigation – San Antonio
Sarah Cannon, The Cancer Institute of HCA Healthcare

Gastrointestinal Cancers

More than 1.8 million people were estimated to develop cancer in the United States in 2020, according to the American Cancer Society. Of these, 333,680 (18.5%) were estimated to develop cancer in the gastrointestinal (GI) system.1 The cancers affecting the GI system include the esophagus, stomach, small intestine, colon, rectum, gallbladder, pancreas, and other digestive organs.1 GI cancers are common among both men and women and are the second leading cause of cancer death in the United States. Many patients with noncolorectal GI cancers are diagnosed at advanced stages of the disease, in part because symptoms are often nonspecific and ongoing.2

Complexity of GI Cancers

Cancer is never straightforward because it behaves differently in each individual’s body. Cancer is a complex group of diseases with varying and sometimes unknown causes. GI cancers are complicated due to the complex nature of the GI tract. Treating GI cancers requires a multidisciplinary team to support the delivery of advanced diagnostic procedures, genetic counseling and testing, and multimodality treatments. Patients undergo numerous procedures to confirm the diagnosis, stage the tumor, and control symptoms. Treatment of GI cancers is complex and often requires a multimodal approach that includes surgery, chemotherapy, and radiation therapy in combination.2

Initial Diagnosis

The nurse navigator (NN) has a unique opportunity to initiate navigation services if the diagnostic procedure yields a positive preliminary cancer diagnosis. Patients visiting the GI lab for a diagnostic procedure may have some idea of a looming cancer diagnosis. At the time of the procedure, the pathologist analyzes the biopsy to confirm or refute a preliminary cancer diagnosis. If the preliminary cancer diagnosis is confirmed, the gastroenterologist contacts the navigator to refer the patient for navigation services. The NN accompanies the gastroenterologist to inform the patient and family of preliminary findings. The gastroenterologists introduce the NN to the patient as an integral part of the healthcare team available to support and guide them moving forward.

The initial introduction of the NN provides an opportunity to create a lasting bond of trust between the navigator and patient. Patients are often more receptive to the NN when the physician supports navigation services. Meeting patients in the GI lab provides the NN with the opportunity to introduce patients and their families to reliable educational resources (before patients consult Dr Google). Appropriate education reduces anxiety and allows the patient to focus on individual concerns. Patients at this moment may divulge barriers to treatment, such as insurance issues or transportation, which enables the NN to address them immediately to prevent treatment delays.

Navigation

From diagnosis to treatment and survivorship, patients are often left alone trying to understand the steps related to their initial workup as well as options for their treatment. Scheduling multiple appointments without a clear understanding of the arc of cancer staging and treatment is a daunting task for patients. With multiple modalities required for treatment, patients can get confused with their healthcare team’s various roles. Patients diagnosed with GI cancers require focused coordination.

At the time of the cancer diagnosis, the NN becomes the patient’s advocate by providing education to help them understand their diagnosis and treatment options, removing barriers to care, and connecting them to local and national community resources. When patients are diagnosed at late or advanced stages of the disease, the NN tailors the education to help the patient and the family understand both the goals of treatment as well as the treatments themselves, including the important role of palliative care. A central role of the NN is to create a clear road map for the patient to the next steps in staging and treatment. The NN facilitates the necessary steps by coordinating care with the healthcare team and assisting the patient with scheduling appointments with multiple healthcare providers. The navigator helps the patient understand each role and the length of involvement of each “player” of the healthcare team. The patient–nurse navigator relationship may help reduce the time from diagnosis to first treatment, especially if the need for additional testing complicates staging and treatment. Patients often find relief in having someone to lean on instead of managing the next unfamiliar steps of their care. Nurse navigators are the one constant to the patient throughout the cancer continuum.

Measuring Impact

It is essential to set goals, collect data, and measure the impact of your navigation programs.3 The leadership team collects data to monitor timeliness to first treatment and patient satisfaction in addition to other metrics. The goal for timeliness is a median of ≤30 days from the initial diagnosis to first treatment. The GI navigators guided over 350 patients diagnosed with GI cancers from September 2019 to September 2020 in the San Antonio market. The median number of days from diagnosis to first treatment (surgery, chemotherapy, or radiation) ranged from 14 to 28 days during that time frame. Patient satisfaction is assessed using a third-party vendor to evaluate the experience with the navigator. Patients provided the following comments regarding the navigator:

  1. “Navigator was a wonderful helper.”
  2. “Navigator explained chemo and side effects.”
  3. “Navigator has been a tremendous support in providing information and encouragement. This is an excellent program.”
  4. “Navigator is very helpful.”
  5. “I really appreciate the navigator that has called and let me know all about the side effects and answered all my questions. You all are awesome and very caring. Thank you!”
  6. “As always, excellent service.”

Overall, the comments regarding navigation are positive and measure the value of the navigation program. Navigation services improve the patient experience during such a vulnerable time of their lives.

Conclusion

Unfortunately, GI cancers are commonly diagnosed at the later stages of the disease and are one of the leading causes of cancer death in the United States.4 GI cancers are complex and often require a multimodal approach. It is essential to initiate navigation at the time of diagnosis to provide education, identify barriers to care, and connect patients with local and national resources. The NN guides and supports patients facing a complicated diagnosis and remain the one constant throughout the patient’s cancer journey. The effects of navigation services can improve timeliness to treatment and patient satisfaction.

References

  1. American Cancer Society. Cancer Facts & Figures 2020. Atlanta, GA: American Cancer Society. www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2020/cancer-facts-and-figures-2020.pdf. 2020.
  2. Griffen-Sobel J, ed. Site-Specific Cancer Series: Gastrointestinal Cancers. Pittsburgh, PA: Oncology Nursing Society; 2007.
  3. Barber K, Goerke R. Setting goals for the navigation program, collecting data, and measuring impact. Journal of Oncology Navigation & Survivorship. 2019;10(6):227-228.
  4. American Cancer Society. Cancer Basics. What is Cancer? www.cancer.org/cancer/cancer-basics/what-is-cancer.html. 2015.
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Last modified: August 10, 2023

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