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Cancer survivors' needs 'not sufficiently addressed' by medical community
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Physical, financial, emotional and mental health problems persist as unmet needs in cancer survivors, according to study results.
Mary Ann Burg, PhD, LCSW, professor in the school of social work at the College of Health and Public Affairs at the University of Central Florida, and colleagues evaluated results from an open-ended survey of 1,514 cancer survivors. They assessed responses overall, as well as by patient characteristics and type of cancer.
Mary Ann Burg
“We wanted to look at how survivors explained their current cancer-related needs in their own words, and to see if needs differed across survivor cohorts or across demographic groups,” Burg told HemOnc Today.
The cohort ranged in age from 24 to 97 years, and it included more women than men (65.4% vs. 34.6%). Respondents were characterized as 2-year (40.1%), 5-year (34.3%) or 10-year (25.6%) cancer survivors.
The population included survivors of breast cancer (43.4%), prostate cancer (21.2%), colorectal cancer (16.2%), uterine cancer (7.3%), melanoma (6.8%) and bladder cancer (5.2%).
Researchers identified 16 themes of unmet needs from the open-ended responses. The most common unmet needs were physical problems (38.2%).
“The oncology community needs to consider if they are providing enough information about potential side effects,” Burgs said. “The primary care community needs to consider how they can invest more time in screening and responding to side effects.”
Other common unmet needs fit into the categories of financial problems (20.3%), education and information needs (19.5%), personal control problems (16.4%), system-of-care problems (15.5%), resource needs (13.8%), and emotional and mental health problems (13.7%).
Each survivor had an average of 2.88 unmet needs. Survivors of breast cancer had the highest number of unmet needs, whereas melanoma survivors had the lowest (2.96 vs. 2.63; P=.01).
Survivors aged 55 years or younger had significantly more unmet needs than those aged 75 years or older (3.09 vs. 2.73; P˂.05).
Men were more likely than women to express physical (52.5% vs. 30.6%) and personal control (29.8% vs. 9.4%) unmet needs. However, financial (22% vs. 17.2%), system-of-care (18.1% vs. 10.7%), resource (16.4% vs. 9%), emotional/mental health (16.1% vs. 9.2%) social support (15.2% vs. 8.2%) and communication (10.6% vs. 4.6%) unmet needs were more common in women.
“Overall, we found that cancer survivors are often caught off guard by the lingering problems they experience after cancer treatment,” Burg said in a press release. “In the wake of cancer, many survivors feel they have lost a sense of personal control, have reduced quality of life and are frustrated that these problems are not sufficiently addressed within the medical care system.”
Researchers plan to next compare the measures of psychological distress and functional capacity in cancer survivors with their expression of these unmet needs, Burg said. – by Alexandra Todak
Mary Ann Burg, PhD, LCSW, can be reached at School of Social Work, College of Health and Public Affairs, University of Central Florida, HPA I, Suite 204, 12805 Pegasus Drive, Orlando, FL 32816; email: m.burg@ucf.edu.
Disclosure: The researchers report no relevant financial disclosures.
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Anne H. Blaes, MD
I commend Burg and colleagues for their devoted efforts in examining open-ended responses of cancer survivors discussing their needs and concerns over 2, 5 and 10 years after diagnosis. This large qualitative study indicates that survivors 2, 5 and 10 years after treatment do not differ in the number of unmet needs reported, or in the types of unmet needs reported. These needs persist over time. The study highlights that women and young adults identified more issues with emotional health, financial need and social support. The study also emphasizes the need for clinicians to address personal control. The need to maintain autonomy as an individual both physically (sexual function, ambulation, evacuation) and socially were important to survivors across the spectrum of survivorship. This study highlights the needs for oncology professionals to incorporate personal control into the management of survivors regardless of time since diagnosis.
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