Most frail breast cancer survivors lack Medicare home care

For the increasing number of women that survive breast cancer, many older, long-term survivors remain frail. A new study out today in the Journal of the National Cancer Institute shows that in a given year over half of these highly frail survivors had no Medicare home health care. 

"When you beat cancer, it's a powerful moment – often a bell is rung on the ward and everyone celebrates. But once home, survivors face health challenges compounded by aging to the point where a lot of them still need help at home years later," said lead author Dr. Xuanzi Shirley Qin, expert in access to cancer care and Medicare, and assistant professor at UMD's School of Public Health. 

"We investigated whether frail survivors who are further out from their diagnosis had Medicare-covered home health care and found that in a given year, about 6 in 10 highly frail survivors had none." 

Traditional Medicare covers personal care at home only when it is tied to a skilled need, and only for people who are homebound. So survivors who mainly need help with bathing, dressing and other personal care, or who are not homebound, fall outside of this coverage. 

"This means many very frail people whose needs are mainly personal care may fall through the gap. Without support at home, this group can face heightened risk of falls or hospital stays," said Qin. 

When you beat cancer, it's a powerful moment – often a bell is rung on the ward and everyone celebrates. But once home, survivors face health challenges compounded by aging to the point where a lot of them still need help at home, even years later.

Dr. Xuanzi Shirley Qin, Assistant professor, Department of Health Policy and Management, UMD

Qin and colleagues, including UMD SPH's Dr. Jie Chen, studied 347,953 "survivor-years" of 134,410 women who were 66 or older with invasive breast cancer, from two to ten years post-diagnosis. The study used cancer registry records from the Surveillance Epidemiology and End Results (SEER) Program linked to Medicare enrollment and claims, as well as the assessments nurses and therapists complete when home health care starts – the Outcome and Assessment Information Set (OASIS). All data dated from 2017 to 2020. The team did not include Medicare Advantage in the research. 

Researchers built a "frailty score" from Medicare claims, using diagnoses and medical equipment, and calibrated it to the frailty index from OASIS in-home assessments. Frailty here describes accumulated health problems and functional limitations such as such as difficulty bathing or dressing, trouble walking, falls, memory problems, incontinence and exhaustion. Then they applied the frailty score to every survivor, including those never assessed for home health, and checked each year whether survivors with high frailty used Medicare home health care. The study measured whether care was used, not whether people qualified for it.

In a given year, about 7% of breast cancer survivors were defined as highly frail and about 40% of this group used Medicare home health care. Among all survivors, 11% used Medicare home health care. This shows that while home health use was much higher among frail survivors, the majority of them still went without it, says Qin. 

Survivors 6 to 10 years out from their diagnosis were as frail as those 2 to 5 years out, suggesting their needs reflect aging more than the effects of cancer treatment, Qin said. 

While about one in eight women will be diagnosed with breast cancer in their life, with earlier detection and better treatment, increasing numbers of women survive: There are 4 million breast cancer survivors in the United States alone. Home health needs for this group will likely only continue to grow and policies should also evolve to meet their needs, said Qin. 

"The results suggest that frailty screening should become a routine part of survivorship care – the follow-up visits survivors have after treatment ends. Some clinics are starting to do this, but survivorship guidelines don't yet call for it. And Medicare should cover the personal care at home that frail survivors need."