Making the Needs of Cancer Survivors a Priority  

When it comes to cancer treatment, doctors and patients put the most energy into ridding the body of cancer. And when a patient’s treatments have proven successful, it is typically cause for celebration.  

But what happens afterwards when a cancer patient becomes a cancer survivor?

Nearly 14.5 million people in the U.S are cancer survivors, according to the National Cancer Institute. Even when a person’s cancer is in remission or their scans show no evidence of disease, lingering side effects and the specter of recurrence will always stay with them. That’s often when help is most needed.

Survivorship care plans are supposed to bridge the gap between cancer treatment and preventive and surveillance care. This helps doctors use the knowledge of the patient’s history to guide them about what to expect when it comes to post-treatment side effects, what sort of diet and exercise plan to follow, and when  to see their doctor again.

Yet, a majority of cancer centers have not integrated survivorship plans into their regular patient care routine. 

Shellie Ellis, Ph.D., assistant professor of Health Policy and Management at the University of Kansas Medical Center and member of The University of Kansas Cancer Center’s Cancer Control and Population Health Research Program, is working with researchers at the University of North Carolina at Chapel Hill to identify what would make cancer centers adopt survivorship plans. They conducted two studies. First, they systematically reviewed survivorship care plan guidelines against an international standard of evidence-based strategies to help health care providers adopt state-of-the-art care. 

They found that the 16 guidelines recommending use of survivorship care plans did not provide the specific steps organizations should take to do so. “While they told them that they ought to do it, they didn’t tell them how to do it,” Dr. Ellis said.

So, in a second study, the researchers interviewed 13 health care workers at seven cancer programs and used the “theoretical domains framework” to help figure out what staffing, institutional environments and external support are most important.

“These plans are intended to improve communication between caregivers and patients and reduce the burden of the late effects of cancer treatment,” said Dr. Ellis. “This study was to see what would help health care organizations actually implement these programs.”

By using the theoretical domains framework (TDF), researchers are following a method that has been used to study other health care processes such as blood transfusions, hand washing and prescription mistakes. The TDF sorts beliefs about survivorship care plans into domains, such as health care providers’ “beliefs about consequences” (survivors benefit from survivorship care plans) and “emotion” (using survivorship care plans is stressful). It then tallies the number of times those interviewed mentioned each domain, along with the strength of belief about that domain.

After surveying the cancer programs that already use some kind of survivorship plan, Dr. Ellis and her fellow researchers were then able to whittle down the most important facilitators of successful implementation, which include:

-Outcome expectancies, or the health care professions belief that survivorship plans would benefit both themselves and survivors
-Intrinsic motivation and Goal priority, or assigning survivorship plans as a main focus for an employee within the cancer program
-Resources, or having a clinic visit devoted to survivorship care plan delivery and the referral systems necessary to get patients into the survivorship visit
-Leadership, or the knowledge that doctors and other administrations supported the use of survivorship plans
-Team working, or the ability to collaborate with other staff members who could assist in making survivorship plans successful

“It is helpful when the healthcare workers have a passion for implementing the program, but the institution and its leaders  must organize, direct, coordinate and purposefully create the conditions for people to succeed,” said Dr. Ellis. 

An aspect that was not important to implementing the survivorship plan was the need to educate and train staff. The nurses and advanced practice professionals who are charged with creating and delivering survivorship plans already possess knowledge and skills necessary for survivorship care plan use. The assessment of potential treatment effects, preventive counseling and patient education required were compatible with nursing professional roles.

In addition, many templates for survivorship plans are available, such as one by the National Cancer Institute Community Cancer Centers Program. It starts with a summary of the patient’s treatment, followed by a list of potential long-term effects associated both with the treatments and the type of cancer they have.

It also includes a list of potential concerns the patient may have, about their emotional health, sexual health, parenting issues, financial concerns, fertility issues and who in their health care team could help address those worries.

The plan also makes recommendations for healthy living when it comes to diet, weight management, exercise, smoking and alcohol intake. Finally, it outlines a follow-up care plan such as future doctor appointments, medication schedules and proper surveillance of potential recurrence.

Having some sort of survivorship program will soon be a benchmark for the country’s top cancer care facilities. In 2015, the Commission on Cancer, a consortium of cancer organizations that seeks to improve care and quality of life, required use of survivorship care plans as a mark of cancer care quality. 

The University of Kansas Cancer Center and the Midwest Cancer Alliance recently opened The University of Kansas Survivorship Transition Clinic for adult survivors of pediatric cancer. These young adults are at risk for such issues as secondary cancers, fertility issues, cardiovascular disease, and weakened immune systems.

"This program helps give pediatric cancer survivors access to long-term care tailored to their unique needs," explains Becky Lowry, M.D., medical director of the new clinic and assistant professor of internal medicine at KU Medical Center.

Survivorship care plans help keep the continuity of a patient’s cancer care and ensure they have their post-cancer needs and fears addressed.

“Past and current research has suggested that these plans help improve peace of mind, and help people start and keep healthy behaviors,” said Dr. Ellis. “It also keeps patients informed about their own cancer, treatment and follow-up care so they can be their own best advocate. Hopefully, this work will help cancer programs add survivorship plans as a standard option for their patients.”

Relevant publications

  • Birken, S. A., Presseau, J., Ellis, S. D., Gerstel, A. A., & Mayer, D. K. (2014). Potential determinants of health-care professionals’ use of survivorship care plans: a qualitative study using the theoretical domains framework. Implementation Science, 9(1), 167.

The Needs of Cancer Survivors

Keeping track of one’s health is just as important after cancer treatment as it is during treatment. It’s important to note any physical or emotional issues and address them at future doctor appointments. Here are important questions to for survivors to ask once they’re in the post-treatment stage.

  • • Do I need any follow-up tests? How often should they be done?
  • • What symptoms should I watch for? Which doctor should I call?
  • • What side effects should I be aware of? How long will they last?
  • • Do I need a diet and exercise plan to stay healthy?
  • • How can I address any mental health needs I might have?

Source: American Cancer SocietyTransitional Cell Carcinoma