Addressing Psychosocial Needs in Cancer Care Has Improved Over Past 20 Years, But More Work Still Needed

Cancer survivors may experience psychological side effects, such as anxiety and depression. But they have many more resources to turn to for support today, compared with 20 years ago.

Bradley J. Zebrack, professor of social work at the University of Michigan School of Social Work in Ann Arbor, explained in an interview with Heal® that at the turn of the century, research into the psychological side effects of cancer was growing more extensive but resources for survivors were lacking.

“Twenty years ago, and I’d say that this is still somewhat true today, you have some cancer centers that are well resourced and are doing a fantastic job of providing support services and social workers and psychologists and have staff on site to help people deal with all the fallout of having had cancer,” he said. “And then you have other centers that are so under-resourced.”

Advancements and Benefits

As cancer survival rates are continually increasing, so are the rates of side effects for this population. Some of the most common side effects a survivor might experience are psychological, including depression and anxiety. Survivors today can address these issues with the help of psychologists, therapists and support groups, leading to improvement in quality of life.

This can benefit survivors’ mental and physical health, relationships with others, ability to work and more, Zebrack explained.

A 1998 study on quality of life in long-term cancer survivors, published in the Journal of the National Cancer Institute, found that they experienced negative impacts just as survivors do today. But there were not as many resources for support then.

The advances made in providing support groups have brought greater recognition for cancer survivors, Zebrack said, adding that there is a more open conversation about the impact the disease has on their quality of life.

“I think what’s different today is a greater recognition of the psychological, the social (and the) spiritual impact of cancer. So, providers, I think, are more willing and able to talk about those topics within the clinical care setting — (compared with) 20 years ago,” he said.

Zebrack said the COVID-19 pandemic has allowed for even more innovation in this space because technological changes also have played a role.

Two decades ago, the internet was not as advanced as it is today — for instance, there were no Zoom support group meetings, which can be an important resource for cancer survivors now. He added that in the past, survivors who would benefit from a support group might not have the motivation to leave their house, sit in a room full of strangers and share their story. Today, however, the ability to join a support group using a computer in the comfort of their living room has opened a new world for cancer survivors.

“The ability to provide support to cancer survivors at the time they want it and how they want it is better today,” Zebrack said. “For teens and young adults affected by cancer, for example, their ability to find information and support when they need it — like 2 a.m., when they can’t sleep or are texting with their friends — is better, given advances in the use of computer technology and the internet to provide resources and support,” he said.

The Next 20 Years

Although there have been many improvements in the past 20 years, there is still work to be done in the next 20, Zebrack added. He mentioned that a 2008 report from the Institute of Medicine (now the National Academy of Medicine) on psychosocial care for patients with cancer found that those who would benefit most from supportive care — including people with severe mental or physical health disorders, or those in underserved populations — were the least likely to receive and benefit from these advancements.

“Those were the people who are most likely to benefit from the availability of support but were the least likely to receive those services,” he added. “And I think that is still somewhat true today.”

In recent years, additional research has shown this gap as well, specifically in cancer survivors who are members of racial and ethnic minority groups, or sex or gender minority populations. For example, according to a 2021 study published in The Oncologist, researchers found that Hispanic and Latino cancer survivors experience a more significant and “often disproportionate” cancer-related burden compared with their non-Hispanic counterparts.

“Quality cancer care is defined as care that is safe, efficient, timely, patient centered, effective and equitable,” Zebrack explained. “Ongoing disparities in care means we still have a ways to go to achieve equity and thus quality for all.”

There has been extensive research over the past 20 years regarding the psychological side effects of cancer and their impact on survivors’ quality of life, and resources needed to overcome these challenges. There likely will be more studies as survival rates increase. It is not just research that has helped these advancements, Zebrack said, but also the survivors who tell their stories.

“I think what is also needed and helpful are the stories that survivors tell themselves; sometimes data is not necessarily the most motivating or stimulating thing to create change,” Zebrack concluded. “We also know that opportunities to tell one’s story about living with, through and beyond cancer are powerful mechanisms for physical and emotional recovery and for achieving quality of life after cancer.”

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