Researchers at the American Cancer Society (ACS) say cancer survivors and their caregivers need more support and care. Specifically, survivors need more frequent and focused follow-up cancer care. And, both cancer survivors and their caregivers would benefit from more personalized care. That means having health professionals pay better attention to their physical and mental needs, as well as their ability to do their daily tasks. The ACS urges professional health associations, advocacy groups, and national leaders work together to make these improvements and others.
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:
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.
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.
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.”
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:
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.
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.
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.
The American Cancer Society (ACS) National Cancer Control Blueprint is a series of papers published in CA: 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.
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