Cancer Survivor Blueprint Aims to Improve Lives of Both Survivors and Caregivers

Thanks to new treatments, better screening, and earlier diagnosis, more people than ever before live a long time after they learn they have cancer. That’s created a compelling need to provide coordinated, comprehensive, and personalized care for both cancer survivors and caregivers, says Catherine M. Alfano, PhD. She’s the Vice President of Survivorship at the American Cancer Society (ACS).

Alfano and several colleagues at the ACS recently outlined 3 main ways healthcare providers and other cancer professionals can improve care for survivors and support their caregivers: 

• Routinely assess both survivors’ and caregivers’ needs and their ability to function and participate fully in their life and work.
• Promote personalized care and support that starts at the time of diagnosis for both survivors and caregivers. This care may occur somewhere other than the doctor’s office or hospital, such as in community settings or at home.
• Support newer ways to provide care and move away from care that doesn’t help, such as unneeded tests or too many follow-up visits.

These recommendations appear in “Equitably Improving Outcomes for Cancer Survivors and Supporting Caregivers: A Blueprint for Care Delivery, Research, Education, and Policy.” This blueprint is one of a series from the ACS and published in CA: A Cancer Journal for Clinicians. The series provides a vision for a national cancer control plan in the US.

Alfano talked with us about why these recommendations are important.

Who Is a Cancer Survivor?

Being a survivor can be described in different ways. Most cancer organizations, including the ACS, believe a person is a cancer survivor from the moment they are diagnosed with cancer. Survivorship is about the health and life of a survivor, including care for their physical, mental, and economic needs, not just their diagnosis and treatment, Alfano says.

“Survivorship is relevant regardless of someone’s treatment path: Some survivors live cancer-free, whereas others live for years with cancer that sometimes has spread throughout their bodies," says Alfano. "For others, cancer is a chronic disease that goes into remission after treatment but can reappear and need treatment again later. Still others live with cancer that a healthcare provider closely watches but doesn’t treat,” she says.

This broad definition of cancer survivorship helps reorient our approach to cancer care, says Alfano. It helps healthcare professionals, survivors, and caregivers think about care to prevent long-term problems starting right at diagnosis, not after cancer treatment ends.

Whole Health Care for Survivors Improves Quality of Life

About 1 out of 4 cancer survivors report a decreased quality of life because of physical problems, and 1 out of 10 report a decrease because of emotional problems. Survivors who have lower income, less education, more health problems, inadequate health insurance, or who are part of a minority group report worse quality of life.  For some survivors, these problems keep them from being able to work or participate fully in community events or family roles and can increase healthcare costs down the road.

“Alongside anti-cancer treatment, healthcare providers need to prescribe the right treatment for these physical, emotional, and functional problems survivors experience,” Alfano says.  “To make sure those treatments meet survivors’ needs, healthcare providers need to understand the survivor’s psychological state, behaviors like exercise, social network, and resources available to them.”

Understanding Survivors' Unique Needs

Survivors’ specific needs depend on many things, including the treatment they're getting, age at diagnosis, and overall health.

The kind of treatment and care they’re getting—or not getting. A survivor may need more than relief of side effects from treatment. They may also have concerns about sexual intimacy, finances, or the cancer coming back. Each of these concerns need care, Alfano says. Healthcare providers can help them find the specific services they need, which may include: 

• Patient education
• Cancer rehabilitation
• Nutrition
• Exercise
• Smoking cessation programs
• Psychosocial care
• Palliative care
• Hospice Care

How old they are when they find out they have cancer. “Doctors need to make sure that people who are diagnosed with cancer during their childbearing years—including teenagers—know that cancer treatment may make it harder to conceive,” Alfano says. “They need information about harvesting eggs or banking sperm before they start cancer treatment.”

Adult survivors who were diagnosed as children have a greater risk for developing another cancer because of the treatments they received. Their doctors need to know about the treatment they’ve had to determine a screening and follow-up plan, Alfano says.

Their overall state of health. Survivors who are 65 or older often face other health challenges, such as heart disease, diabetes, or arthritis, that need to be managed in addition to the effects of cancer treatment, Alfano says. Also, adult survivors of any age who were diagnosed with cancer during their childhood often have more health conditions than those diagnosed as adults.

Their access to health care services. “Some survivors have complex needs that doctors must manage during a follow-up visit,” says Alfano. “But health professionals can help make it easier for survivors to receive care. For instance, instead of setting up a doctor's appointment, they may refer or suggest other ways to manage care." These may include telemedicine, self-management support, and help from patient navigators, she says.

• Telemedicine allows health professionals to check, diagnose, and treat patients at a distance instead of a patient traveling to an office or clinic to be seen. It may involve a patient using or wearing a device that lets their doctor monitor them for certain side effects. It may also include check-ups that take place over the phone or by using audio and video conferencing methods through the internet.
• Self-management support is a type of personalized care for people with a chronic condition. It requires improved electronic records to help improve communication between doctors and patients. For instance, the electronic record system may trigger providers to make referrals, or it may directly send patients information about how to care for themselves. Improving communication and ongoing education helps health providers, patients, and caregivers customize a care so that it’s specific to a patient’s health problems and access to care. For instance, care plans may be customized with referrals to community resources, like exercise programs at the YMCA.
• Help from patient navigators. These are staff or nurses trained to help patients understand and set up the logistics of care based on their diagnosis. For instance, a patient navigator may help patients and caregivers find providers who are in the patient’s insurance network, negotiate problems with health insurance, and help communicate with a care team.

Whole Health Care for Caregivers Helps Them and Survivors

Cancer affects a survivor’s family and friends, too, especially if they become a caregiver.  

Just like we need to start early learning about survivors’ needs, “we need to understand what informal caregivers need from diagnosis forward," Alfano says. "They need that support to give the best care to the survivor they support and to keep themselves healthy.” 

Caregivers often say that they have persistent unmet psychological, medical, financial, and daily activity needs throughout the survivor’s cancer treatment and beyond. Studies show their needs are most prevalent within 2 years of the patient’s diagnosis, but they may continue to have needs for up to 5 years.

How to Take an Active Role in Your Care

This ACS Blueprint lays out improvements in the delivery of care to cancer survivors and their caregivers. But it won’t happen overnight—our healthcare system isn’t set up to routinely ask, “do you need something?”

“That’s why you have to be the squeaky wheel,” Alfano says. “Speak up to make sure you get answers for all of your questions, whether you’re a survivor or caregiver.” If you don’t understand the answer the first time, ask again. “Bring up your concerns with your healthcare provider and make sure you get the information or care you need for all of them. Don’t just assume there isn’t a solution.”

Tell your health care providers about your cancer history even if they don’t ask. Give copies of any medical records you have or ask your previous care team to transfer them.  

Taking an active role also means doing your best to stay healthy. Here are some resources for survivors and caregivers.

• Survivorship care plans. These plans include guidelines for monitoring and maintaining your health.
• SurvivorSHINE. This online program provides personalized information and tools to help cancer survivors maintain a healthy weight.
• The ACS Cancer Support Helpline (800.227.2345) is available 24 hours a day for cancer survivors and caregivers.

The American Cancer Society (ACS) National Cancer Control Blueprint is a series of papers published inCA: A Cancer Journal for Clinicians.The goal of these papers is to describe evidence that will support creating a cancer control plan for the United States and putting the plan into action. This is the fourth story on cancer.org about the ACS Blueprint. The first story was about the blueprint’s goals. The second was about how well cancer control is working in the US. The third was about controlling risk factors to help prevent cancer.