After completing treatment, cancer survivors can face tremendous uncertainty about what life will be like after cancer.
No one knows that better than Katherine Sterba, Ph.D., a behavioral scientist at the Medical University of South Carolina and researcher in MUSC Hollings Cancer Center’s Cancer Control Program. She specializes in helping cancer survivors and their caregivers with care transitions after cancer.
With an aging population and advances in cancer treatment, the number of cancer survivors has increased dramatically in recent years and is projected to increase by 29.1%, to 21.7 million by 2029, according to the National Cancer Institute (NCI).
“Working with families to achieve physical, emotional, social and spiritual well-being is so critical after all they have been through and face ahead,” Sterba says. “We need to measure unmet needs and address all those areas.”
The NCI’s Office of Cancer Survivorship defines survivorship as spanning from the moment of diagnosis through the rest of a patient’s life and includes caregivers, family and friends.
“Based on the complex and varied treatment types and potential toxicities our cancer survivors face, a one-size-fits- all approach won’t work, and we need to consider each individual survivor’s needs and create tailored programs,” she says. “My research focuses on developing interventions for delivery in the oncology setting at the end of treatment that are focused on survivors and family caregivers to help promote optimal recovery and better transitions in care from treatment to the post-treatment period.”
What her research has shown is that this can be a period where cancer survivors feel lost after leaving the safety net of care and may not know how to connect to the right support services. They may need links to a variety of different resources at this time, and research has not yet determined the best models for follow-up care for this growing population of survivors.
Because there are unanswered questions regarding the long-term effects of cancer treatments, it is hard to gauge how to optimize care for cancer survivors, 64% of whom are over the age of 65, Sterba says. Survivorship is a critical area of research, and caregivers are often an overlooked group.
According to the American Cancer Society, 40% of caregivers reported caregiving as emotionally difficult. The Cancer Caregiving in the U.S. report found cancer caregivers spend an average of 32.9 hours a week caring for their loved ones, with 32% providing 41 or more hours of care weekly, the equivalent of a full-time job.
“Caregivers take on challenges in caring for a loved one with cancer, and we have to stop and think about the toll this can take on caregivers,” she says. “Caregiving demands can involve emotional challenges and financial toxicities and may cause caregivers to overlook their own health.”
Many people aren’t aware of this toll, and when they find themselves in a caregiver’s role, feel they don’t know what to do. Sterba hopes to change that – in part by exploring how technology can assess and address needs. Her recent research, specifically designed for head and neck cancer survivors and their caregivers because of their nuanced care needs, includes studies involving three areas:
- Survivorship needs assessment.
- End-of-treatment care plans.
- A mobile resource app for caregivers.
End-of-treatment care planning is critical for head and neck cancer patients, she says. “These plans are really unique and different than survivorship care plans for other types of cancers,” Sterba says. “We sat down at the end of treatment with both survivors and caregivers, marking the transition from treatment to the post- treatment period.”
In a 45-minute meeting, they provided care plans to the survivors that outlined their diagnoses and treatment and follow-up care plans along with information concerning symptoms to watch moving forward, potential adverse treatment effects and health promotion recommendations such as smoking cessation, healthy diets and physical activity.
In a complementary study, Sterba and other researchers developed a survivorship needs assessment planning tool they call SNAP to assess needs at the end of treatment in head and neck cancer patients and caregivers.
“We have developed a survivorship care planning tool that is a quick needs assessment to try to speed things up and get right to the family’s immediate concerns,” she says. “Survivors receive the care plans along with a set of messages and referrals to try to help meet their current needs, address any barriers to follow-up care and link them with supportive care referrals and other resources over time.”
Before their survivorship visit, patients and caregivers are given tablets to fill out brief assessments that take six minutes for caregivers and 11 minutes for patients to complete, she says. Based on the responses, tailored care plans are generated to help to address the most pressing concerns, issues, symptoms and health behaviors.
Megan Scallion, a social worker at MUSC and program coordinator on the study, says meeting with the patients and caregivers was often emotional. One aspect she likes about the study is how it includes caregivers, who often carry a heavy load of stress.
“Caregivers sometimes became emotional in discussions of their roles during their loved ones’ treatment and recovery. The care they provide during these time periods is demanding and may cause caregivers to overlook their own personal needs,” she says.
Just going over the plan was therapeutic. “Reviewing the care plans allowed time and space for caregivers to recognize their efforts and give themselves permission to focus more on their own needs now that their loved ones are in the long-term recovery phase,” she says.
In addition to implementing survivorship care plans into head and neck cancer post-treatment routine, health professionals have developed a template that could be uploaded into patients’ electronic medical records so nurses and doctors can generate the care plans that are in line with guidelines from the Commission on Cancer.
SNAP has helped doctors like Evan Graboyes, M.D., a Hollings Cancer Center head and neck oncologic surgeon-scientist, identify the specific needs of each survivor and caregiver.
“SNAP helps me offer personalized care that addresses the aspects of survivorship care that matter to patients and their caregivers without wasting their time, money or energy on other aspects of their survivorship care that aren’t as relevant or important,” Graboyes says. “Because SNAP is comprehensively mapped to all domains of survivorship care, I know that I am not missing anything for my patients and caregivers.”
Sterba also is exploring how to develop an app specifically for caregivers of head and neck cancer patients. “The app is focused on sending caregivers home at the end of radiation therapy with tools, resources needing interventions to take home with them at the end of treatment.
“Our caregivers end up doing a lot of medical tasks and nursing tasks,” Sterba says. “Their lives really change.” The app will give caregivers tools to help to transition into survivorship and manage stress, providing resources such as encouraging videos, practical tips, relaxation exercises and easy recipes.
While this intervention work is exciting, it is also important to study how to get promising interventions that have been developed for cancer caregivers into the clinic, she says.
Sterba also is leading a current study in partnership with Wake Forest University that is scanning cancer centers around the country to evaluate their practices for identifying and assessing needs in cancer caregivers and to evaluate the availability and delivery of services for caregivers in the oncology setting. Findings will be used to guide the development of system-level interventions to help cancer centers deliver supportive care resources to caregivers who need them.
“We really want to see what’s going on out there so we can figure out the best ways to get good programs into the hands of those who need them,” Sterba says. “I hope these interventions can be disseminated widely.”
Sterba hopes to see her survivorship research and technologies scaled up further and implemented into practice, she says. Survivorship resources could help patients get through the early recovery period faster and avoid poor outcomes such as adverse long-term treatment effects and unplanned health care visits or hospitalizations.
“ Cancer survivors are the most courageous people I know, and while the advances we have made in treatment are amazing, we have a commitment to assist our survivors and their caregivers to help them reach their best quality of life after cancer. ”
Dr. Katherine Sterba