(Reuters Health) - - As a growing number of people live decades after a cancer diagnosis, doctors and scientists are developing treatment guidelines for survivors. But a U.S. report suggests more work is needed to improve the consistency and quality of survivorship care.

It’s been more than a decade since the Institute of Medicine (IOM) released its seminal 2006 report on adult cancer survivors. The report galvanized the cancer care community, calling for a shift in thinking to focus not just on treating tumors but also on minimizing lifelong medical problems that can be caused by malignancies or by surgery, medication, and radiation.

Although there has been progress, many recommendations from the 2006 report have not been fully implemented, researchers note in the Journal of the National Cancer Institute.

“One of the greatest `advances’ has been in a greater recognition of the continued challenges that cancer survivors face after treatment, whether it be organ toxicity or premature aging from chemotherapy, residual effects from surgery, the psychological stress that comes with not knowing if the cancer will return, and the financial toxicity of therapy, which can sometimes continue on a long-term basis since some treatments continue indefinitely,” said lead author Dr. Ron Kline of the Center for Medicare & Medicaid Innovation in Baltimore.

“Recognition of these gaps is spurring leaders in the field to develop and test new models of survivorship care and to critically ask what `quality’ survivorship care looks like,” Kline said by email.

Since the IOM report came out, health care providers have done better at helping patients and families understand that survivorship is a distinct phase of cancer care, Kline’s team reports.

For example, the IOM recommended that patients get “survivorship care plans” to help them navigate the ongoing screening and therapy after they complete cancer treatment. But it’s unclear how widely used these plans are, or whether or how they improve outcomes.

Part of the problem is that there aren’t clear quality benchmarks for measuring or improving survivorship care. Most quality measures focus on treating tumors, not on helping survivors navigate life afterward, the new report notes.

Education for providers on survivorship care recommended by the IOM hasn’t been widely used by clinicians, even when professional and volunteer organizations have developed training programs, the new report says.

One area of progress is insurance. The Affordable Care Act, also known as Obamacare, requires health plans to sell coverage even to people with pre-existing conditions and charge fees similar to what people without a cancer history might pay. The permanence of many provisions of Obamacare is uncertain, researchers note in the new report.

Lasting financial problems can also linger for years, with missed work and disabilities that limit job prospects and with medical bills from ongoing care, said Dr. Ryan Nipp of the Massachusetts General Hospital Cancer Center in Boston.

“Survivors of cancer often require close monitoring and frequent interactions with the health care system as a result of their cancer, which can lead to high out-of-pocket costs and continued time away from work,” Nipp said by email. “This financial burden can affect patients’ quality of life and may influence their decisions surrounding their survivorship care.”

Another challenge with newer treatments is that doctors haven’t had enough experience with them yet to fully understand patients’ long-term prognosis, Nipp said.

“Some of the biggest challenges include issues related to the definition of cancer survivorship and the evolving landscape of cancer therapies, which can often complicate oncologists’ ability to accurately prognosticate for our patients,” Nipp added.

SOURCE: bit.ly/2EI6EaY Journal of the National Cancer Institute, online November 29, 2018.