The percentage of cancer survivors who struggle with a disability has doubled in the past 20 years, new research shows.

“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,” said study co-author Dr. S.M. Qasim Hussaini. He is chief medical oncology fellow and a health systems researcher at the Johns Hopkins Kimmel Cancer Center, in Baltimore.

“Overall, our study calls for urgent action to address the burden of cancer and its treatment on physical, psychosocial and cognitive function,” Hussaini said in a Hopkins news release.

The study of more than 51,000 survivors was weighted to represent a larger population of 178.8 million people. About 3.6 million survivors had a functional limitation or disability in 1999, but that increased to 8.2 million in 2018.

The study authors wanted to understand whether increasing survivorship was associated with one of the key determinants of quality of life: functional ability.

To do this, the investigators reviewed 20 years of records from the U.S. National Health Interview Survey.

The researchers reviewed responses from 1999 to 2018, looking for 12 functional limitations, including inability to stand for more than an hour, difficulty sitting for more than two hours and difficulty participating in social activities without assistance.

About 70% of survivors reported at least one type of functional limitation, which is twice as much as the general population.

This was highest among survivors of pancreatic cancer (at 80%) and lung cancer (at 76.5%). It was lowest for melanoma (at just over 62%), breast (at just under 62%) and prostate cancer (at nearly 60%).

Hispanic and Black survivors experienced a disproportionate increase in these limitations during the study period. This could indicate improved access to cancer treatment but poorer quality of survivorship care, the study authors said.

The findings were published online recently in JAMA Oncology.

“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,” Hussaini said.

“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,” he added.

More information

The U.S. National Cancer Institute has more on cancer survival.

SOURCE: Johns Hopkins Medicine, news release, June 7, 2023