Building a Survivorship Navigation Program: Lessons Learned

January 2017 Vol 8, No 1

Developing an evidence-based survivorship navigation program involves a fair amount of trial and error, according to JaLisa Boyd, RN, BSN, MS, and Katie Navarte, LMSW, who make up a nurse/social worker survivorship navigation team at Sarah Cannon, the Cancer Service Line for Hospital Corporation of America (HCA) hospitals.

Ms Boyd and Ms Navarte serve 9 hospitals in the Dallas/Fort Worth area, and together they comprise the first and only survivorship navigation team in the National HCA/Sarah Cannon markets. Ms Boyd, who has 18 years of nursing experience, touted the benefits of having a social worker as the other half of her survivorship navigation team because they balance each other out; she maintains a medical focus whereas Ms Navarte maintains a psychosocial focus.

“When we first started developing this program, with no navigation experience, we thought, ‘how can we bring value to a group of navigators who have been doing it much longer than us?’” said Ms Navarte at the Academy of Oncology Nurse & Patient Navigators 7th Annual Navigation & Survivorship Conference. She and Ms Boyd described their process and told attendees how to integrate this type of team into the care continuum at their organizations.

Developing the Program

First, they researched the existing literature and sought to define the need for a survivorship program. They learned that there are 14.5 million cancer survivors in the United States, and by 2024 there will be almost 19 million due to improvements in screening, prevention, and treatment. They found that survivors’ quality of life is impacted by factors in 4 general categories: physical well-being and symptoms, social well-being, psychological well-being, and spiritual well-being. And to determine how survivorship navigation could potentially help these patients, Ms Navarte said they shadowed disease-site navigators and physicians, and asked patients what they would like to see in a survivorship navigation program. They also referred to best practice programs at institutions such as Memorial Sloan Kettering Cancer Center, MD Anderson Cancer Center, City of Hope, and Moncrief Cancer Institute.

Next they conducted a hospital community needs assessment within the communities surrounding 5 of their HCA hospitals. They found gaps, particularly in the area of survivorship. So they created their own survivorship needs assessment to assess the post-active treatment needs of cancer survivors in the entire Dallas/Fort Worth area and utilized their disease-site navigators to distribute a survey. Based on the results from the survey, they were able to develop support groups at 2 of their hospitals, as well as a quarterly education seminar.

Next, they determined their boundaries. “Our boundaries are specific to us, and they’ll differ from yours when you’re creating a survivorship navigation program,” said Ms Navarte. “But 3 are universal.”

One is funding; she recommends working with nonprofits to attain resources and really examining the resources of each hospital individually to determine what types of programs they can realistically fund. Another is employee bandwidth. She and Ms Boyd realized they didn’t have enough staff to facilitate their support groups, so they developed community partnerships to fill the gaps. “Identify your boundaries and brainstorm ways to work around them,” she said.

The third universal boundary is patient enrollment in a survivorship program. At Sarah Cannon, the disease-site navigator, along with the primary physician responsible for the patient’s care, decides when the patient has completed treatment and is ready to be transferred to survivorship. At that point, the disease-site navigator creates a survivorship care plan, as a complement to the oncologist’s survivorship care plan, should they have created one as well. The patient is then transferred to one of the survivorship navigation team members, and the survivorship follow-up process begins.

Implementing the Program

“It’s been a long process to get to this step,” said Ms Navarte. “We did our research, we looked at our boundaries, we did our survivorship needs assessment, and now we want to implement something. And for me, this has been the hardest part.”

She said implementation is a cyclical process and explained how a new support program at one of their satellite facilities started off with high attendance, but by the third month of the program, hardly anyone was showing up. After asking patients why they stopped attending, they learned there was a new construction project on a nearby highway that was causing heavy traffic delays in getting to the medical center, so patients stopped participating in the program. They were able to create a workaround by developing online monthly webinars, but she emphasized the fact that unforeseen circumstances can cause barriers, and it is important to always remain flexible. “Each failure is an opportunity to learn, grow, and reinvent how we’re meeting the needs of our survivors,” said Ms Navarte.

Finally, using qualitative and quantitative research, a program evaluation should be conducted, measuring its effectiveness, making improvements, assessing program objectives, and addressing cost. Due to their research they observed a low return on paper surveys, so they started using SurveyMonkey and were able to calculate an exact value saved to their division as a result of the switch.

Barriers to the Sarah Cannon Survivorship Program

With not enough disease-site navigators serving their 9 hospitals, they turned to technology to maintain patient follow-up, said Ms Boyd. They ask patients how they prefer to be contacted (text, e-mail, phone call, etc), and they’ve started online patient support groups.

The team was initially concerned with their lack of survivorship knowledge and dearth of prior survivorship program models to follow, but they created a successful milestone touchpoint process and are noting what the common needs are at initial conversation and at 1, 2, 3, 6, 12, and 18 months from being transferred to the survivorship team. “We now have about 280 patients we’ve been following over the past year and a half,” Ms Boyd reported.

To address lack of knowledge and posttreatment patient needs, they’re in the process of distributing an online survivorship needs assessment, they implemented “Thriving with Cancer” psychoeducational groups that focus on the needs of cancer patients in active treatment, and they have active alumni groups that meet every 2 months for dinner and participate in community events.

To address lack of awareness of their program, they attended tumor boards, volunteered at hospital and community oncology events, met with office staff, and marketed their survivorship navigation program in the community. “We take time for stewardship whenever we can,” said Ms Boyd.

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Last modified: August 10, 2023

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