UAMS Researchers Look at Challenges Faced by Cancer Survivors
| Beating cancer is always the goal, but surviving cancer can come with its own set of unique challenges, according to a recent study by researchers at the University of Arkansas for Medical Sciences (UAMS).
From quality of life, survival, managing side effects, and managing economic impacts, the researchers explored the biggest cancer-related challenges faced by a diverse group of cancer survivors who received care in the rural state of Arkansas.
“We were looking to provide holistic insight into the quality of cancer survivorship,” said Pearl McElfish, Ph.D., director of the UAMS Institute for Community Health Innovation, and one of the researchers involved in the study. “Cancer survivors face a range of challenges, primarily psychosocial challenges, issues with ongoing care, and physical and/or functional consequences of a cancer diagnosis and treatment.”
Nearly half (48.4%) of all the study participants identified challenges related to quality of life, and 39.7% of all responses focused on the challenges of managing the side effects of cancer and its treatment. Managing the economic impact (6.9%) and survival (4.9%) were also identified as challenges by survivors.
“Our analysis highlights the importance of understanding the psychosocial and physical sequelae of cancer and its treatment,” McElfish said. “Our research helps fill significant gaps in the literature, improving the understanding of rural cancer survivorship, and will continue to be critical for developing effective, evidence-based practices to meet the needs of survivors.”
Millions of people in the United States and around the world live beyond their cancer diagnosis and treatment. According to the American Cancer Society, the number of cancer survivors in the U.S. is projected to reach 22.2 million by 2030. Today, 69% of survivors live five years or longer beyond their diagnosis, 47% live 10 or more years beyond their diagnosis, and 18% are living 20 years or more. The substantial increase in cancer survivors has been attributed to improvements in cancer screening, diagnosis, treatment, supportive care and an aging population.
“Research on cancer survivorship is limited,” McElfish said, “and there remains a critical gap in our knowledge regarding the unique challenges facing cancer survivors. In particular, and something that is of specific importance in a rural state like Arkansas, is the lack of research on the challenges of managing cancer care of people in rural communities, who often face significant cancer health disparities including access to care, transportation, participation in screening, and diagnosis at advanced stages.”
Survivors frequently identified a range of psychological and emotional challenges stemming from their cancer and its treatment. One survivor described their cancer’s toll on their quality of life, stating, “It has changed me completely; I’m no longer the happy person I once was. I do not like (how) it makes me feel emotionally, physically.”
Another survivor’s greatest challenge related to feelings of guilt and shame arising from not having received chemotherapy or radiation therapy for their cancer, stating, “I’m so grateful I didn’t have to do chemo or radiation, but I feel ashamed when I have to tell people I didn’t have to do that when all of the people I know that have breast cancer had to have all of those treatments. It makes me feel very guilty.”
Another challenge facing many survivors was the fear of recurrence of their cancer, its spread to other body systems or sites or diagnosis of another form of cancer. One survivor succinctly described their greatest challenge as “worrying the cancer will come back.” Another survivor stated, “I constantly worry that it will come back, and that when it does come back it will be worse than before. I think about this several times a week and get super anxious about it regularly.”
Other survivors spoke of social challenges associated with their cancer, with one survivor stating, “Cancer has robbed me of my energy, income and sometimes, happiness. We wanted to travel and enjoy life, but now we can’t. It’s robbed me of my dignity.”
Survivors also reported related challenges, including reduced ability to engage in meaningful and enjoyable social connections, changes to their social identity related to survivorship, and impacts on sexual intimacy and/or romantic relationships.
The study, “I’m Learning to Live after Cancer and Its Treatment”: Exploring the Challenges of Cancer Survivorship in Arkansas, was published in SSM – Qualitative Research in Health.
This study was supported by University of Arkansas for Medical Sciences Translational Research Institute funding awarded through the National Center for Advancing Translational Sciences of the National Institutes of Health (NIH) (UL1 TR003107) and the Community Engagement Alliance (CEAL) Against COVID-19 Disparities (NIH 10T2HL156812-01). This work is also supported by the Winthrop P. Rockefeller Cancer Institute Rural Research Award Program (AWD00055587).