Survivorship care delivery varies in different healthcare settings depending on the staffing, patient populations, and geography. Medical care for patients with cancer who live in a rural area requires a particular level of collaboration and coordination due to the healthcare delivery system and available resources. Patients often have to travel long distances to receive care from an oncologist or cancer center. Treatment centers may not offer all treatment modalities, requiring that patients travel to multiple facilities over a wide region for their care. Survivorship care in the rural setting results in more involvement with the primary care practitioner (PCP), shifting care away from oncology specialists. And while creating a survivorship care plan (SCP) can be more cumbersome when patients are treated at multiple institutions, the resulting document in rural areas can be especially important to share with the PCP, who regains the role as primary healthcare provider for cancer survivors.
In our case study in rural Maryland, near the West Virginia border, the sole clinic operates with only 1 oncologist. The PCPs in the area have been included to become more involved in the survivorship posttreatment phase because of the need for shared care. All the local PCPs have access to the cancer center’s electronic medical records. When the oncologist writes a patient note, she copies it to the PCP. The note shows on their electronic work list and lets them know that the patient has new treatment or status information. All patients are required to have a PCP.
Patients receive surgical and medical oncology care at the center but need to travel 50 miles to receive radiation treatment. This poses a challenge when the time comes to create the survivorship care plan, because it is difficult to have the complete information about the radiation treatments.
Since resources are somewhat limited at the cancer center, the nurse navigator must be resourceful in meeting patients’ survivorship needs during and after treatment. The navigator facilitates a support group twice a month. When needed, patients are referred to counseling in the community, because there are no social workers on staff. The navigator is also instrumental in referring patients to rehabilitation and nutrition services at the center. Because the radiation center is 50 miles away, the hospital provides transportation in a vehicle purchased through a Health Resources & Services Administration grant. Additional support for copayments, gas cards, and hotel stays comes from a local community cancer foundation, which covers only 1 county in the service area. The navigators work with other national cancer foundations and the American Cancer Society (ACS) to find assistance for the other counties in their care area. The cancer center will soon be using Journey Connections, an online resource developed by Lilly Oncology for the healthcare professional to identify local resources for their cancer patients and survivors.
TS is a 51-year-old female who recently completed treatment for stage I breast cancer at a rural cancer center in Maryland. A small lesion was discovered on a routine mammogram ordered by her PCP. The cancer diagnosis was confirmed by an ultrasound-guided biopsy. TS was referred to a surgeon for a partial mastectomy. The surgeon referred the patient to the nurse navigator, who coordinated a consult with the hospital’s oncologist and provided some education at the initial visit. The navigator also addressed some insurance concerns because the center does not have a social worker on staff. The nurse navigator continued to track TS throughout her care, using a free navigation software called PN-BOT—created by The George Washington Cancer Institute—that can be used to document, track, and provide reports about patient navigation activities. The Excel database can provide a way to document barriers and solutions and produce reports to demonstrate the value of navigation. Using PN-BOT, the navigator is able to identify patients who are in treatment with curative intent and are completing treatment.
Over the course of the treatment, the nurse navigator visited TS in person to check in and to connect her with resources as needed. The nurse navigator provided TS with gas cards and Ensure (nutritional supplement) and also referred her to the local cancer foundation for additional resources.
When TS had completed all her chemotherapy treatments, the medical oncologist consulted with the nurse navigator and wrote an order for a radiation consult. The navigator set up the consult with the radiation facility located an hour away. She also contacted the nurse navigator at that facility to make her aware of the patient and asked that she be notified when the radiation was finished so that a follow-up appointment with the medical oncologist could be scheduled.
When TS was finishing radiation treatment, the nurse navigator from that facility called the cancer center navigator, and the two nurse navigators discussed the care plan. Using the American Society of Clinical Oncology (ASCO) SCP template, the cancer center nurse navigator took primary responsibility for creating the plan, pulling information from various sources. On average, each plan takes about 1 hour to complete. The PN-BOT spreadsheet often contains treatment information that is useful for the SCP. The nurse navigator completes the surgery and biopsy information using the physician’s H&P and consult notes. The chemotherapy regimen and dates come from documentation that the clinic nurses keep. The nurse navigator uses the National Comprehensive Cancer Network (NCCN) survivorship guidelines to complete the ongoing surveillance plan for TS. The nurse navigator then e-mailed the plan to the navigator at the radiation center to complete the radiation portion. The cancer center nurse navigator reviewed the final copy with the oncologist.
When TS came for her first follow-up visit, the oncologist reviewed NCCN guidelines with the patient. Then the nurse navigator presented the SCP to the patient, reviewing the entire form and an information sheet from ChemoCare.com about any side effects. TS had an ongoing wound issue, resulting from diabetes, and neuropathy exacerbated by the chemotherapy. The navigator ensured that the care plan addressed wound care and managing neuropathy. The ASCO SCP lists reasons to call the oncologist, and TS was provided contact information and encouraged to contact the cancer center with any concerns. The nurse navigator encouraged TS to contact the ACS for other survivorship resources. The nurse navigators will also connect with TS when she comes for her next follow-up appointment to address any ongoing or new issues.
Novice navigators can support patients in survivorship from the point of diagnosis and beyond treatment. Understanding and assessing how an individual patient may be managing the various domains of care, including medical, psychosocial, spiritual, emotional, and financial, can guide the navigator in providing care and interventions. Navigators new to the field or cancer center should become aware of all services available within the institution and in the community, as well as online or through national advocacy organizations. Networking with other nurse or patient navigators, social workers, case managers, financial advisors, and center administrators is a good way to learn about existing and emerging new support resources and best practices related to navigation and survivorship. Navigators can get involved in developing the process for providing SCPs and can facilitate care coordination between the patient, the oncology team, and the PCP. And finally, navigators can get involved in evaluating survivorship care, the SCP process, and the services and programs available to survivors to improve quality of care.
The authors can be contacted as follows:
Eugenia Artice, RN-BC, BSN, WVU Cancer Institute
Marian E. Gilmore, RN, OCN, ONN-CG, Dana-Farber/Brigham and Women’s Cancer Center
Pam Goetz, BA, OPN-GC, Sibley Memorial Hospital, Johns Hopkins Medicine
Barbara McHale, RN, BS, OCN, ONN-CG, CBCN
Retired, Hildegard Medicus Cancer Center
|American Cancer Society
American Cancer Society (ACS) Guidelines on Nutrition and Physical Activity for Cancer Prevention
American Society of Clinical Oncology (ASCO patient website)
American Society of Clinical Oncology (ASCO) Survivorship Care Planning Tools
ASCOanswers Cancer Survivorship (patient booklet)
ASCOanswers Managing the Costs of Cancer Care (patient booklet)
ASCOanswers Palliative Care (patient booklet)
ASCO Stopping Tobacco Use After a Cancer Diagnosis (patient booklet)
Cancer Support Community
Journey Forward Cancer Care Plan Builder
Health Resources & Services Administration (US Department of Health & Human Services)
Journey Connections (Lilly Oncology)
National Cancer Institute
Topics in Integrative, Alternative, and Complementary Therapies (PDQ®)–Patient Version and Health Care Professional Versions available
National Coalition for Cancer Survivorship
National Comprehensive Cancer Network (NCCN) Survivorship Guidelines
Patient Navigation Barriers and Outcomes Tool (PN-BOT)