The percentage of survivors of cancer reporting functional limitations in the United States has more than doubled over the past 20 years, according to a new study in the journal JAMA Oncology. The work, published May 11, was a collaborative effort from investigators at the Johns Hopkins Kimmel Cancer Center, the Dell Medical School in Austin, Texas, and the University of Minnesota’s Masonic Cancer Center in Minneapolis.
In a study of 51,258 survivors weighted to represent a larger population of approximately 178.8 million people, 3.6 million survivors reported a functional limitation in 1999. That number increased to 8.2 million in 2018 — a 2.25-fold increase. The adjusted prevalence of functional limitation was highest among survivors of pancreatic (80.3%) and lung (76.5%) cancers and lowest for survivors of melanoma (62.2%), breast (61.8%) and prostate (59.5%) cancers.
“The fact that we are saving more lives from cancer is worth celebrating, but it also warrants a shift toward understanding and improving the quality of life for those who survive,” says study co-author S.M. Qasim Hussaini, M.D., M.S., chief medical oncology fellow and a health systems researcher at the Kimmel Cancer Center. “Overall, our study calls for urgent action to address the burden of cancer and its treatment on physical, psychosocial and cognitive function.”
Although cancer survival and the total number of survivors has steadily increased since the early 2000s, there is little information about the quality of life for these patients. The researchers conducted the study to understand whether increasing survivorship was associated with one of the key determinants of quality of life: functional ability. The study was led by Vishal Patel, a medical student at the Dell Medical School. Arjun Gupta, M.D., a medical oncologist and supportive care expert at the University of Minnesota, joined in conducting the study. Patel will move to Johns Hopkins in July.
The investigators reviewed 20 years of records from the National Health Interview Survey, an annual study from the Centers for Disease Control and Prevention that asks patients across the United States about their health conditions. Researchers reviewed responses from 1999 to 2018 to identify people who survived after a cancer diagnosis and to determine if they had any of 12 functional limitations such as inability to stand for more than an hour, difficulty sitting for more than two hours and difficulty participating in social activities without assistance. Most survivors were women (60.2%) and most were age 65 or older (55.4%).
Some 70% of survivors of cancer reported at least one type of functional limitation, which is twice as much as the general population, the researchers say. The study also found that Hispanic and Black survivors experienced a disproportionate increase in functional limitations during the study period, which could indicate improved access to cancer treatment but poorer quality of survivorship care.
“The number of cancer survivors who report any limitation in their daily functional ability has more than doubled in the past 20 years, and this amounts to 8 million such people,” says Patel.
Overall, the study calls for urgent action to address the burden of cancer and its treatment, Hussaini says.
“The findings are concerning societally and clinically,” he says. “Greater efforts are needed to ensure that cancer survivors have access to high quality survivorship care and that clinicians are more readily able to identify and address the burdens of cancer. At the patient level, our research should spur future efforts investigating the causes of increasing functional limitation, while at the institutional level, it should put more of an emphasis on incorporating outcomes like functional status as key endpoints in clinical trials for novel therapies. Further efforts at the health systems level may consider how survivorship care could be redesigned with better provider training and reimbursement structure.”
