First-ever cancer survivor survey in Wisconsin finds room for improvement at treatment centers

MADISON, Wis. — The first-ever survey of cancer survivors at Wisconsin cancer centers found opportunities for the centers to expand services.

All of the 40 centers that participated in the survey, including Gundersen Health System and Mayo Clinic Health System in La Crosse, reported working with community partners, according to a news release Friday from the Wisconsin Cancer Collaborative.

The cancer centers’ standards of care include discussions with survivors about the long-term effects of cancer, the survey determined.

However, researchers discovered key areas to improve. For example, while effects such as emotional distress and medical changes were discussed with most patients, sexual functioning and fertility were not, according to the collaborative’s release.

Cancer survivors often require multifaceted care and support for medical, psychological and social needs during and after treatment, and not all of those needs are obviously connected to cancer, according to the release on the survey, with results published in the Journal of Cancer Survivorship.

A cancer survivor is defined as anyone who has ever been diagnosed with cancer, regardless of where they are in the course of their disease, according to the collaborative. Treatment advances are increasing the number of cancer survivors, as well as their unique and complex needs, the collaborative says.

Fewer than half of the sites surveyed described their standards of care for survivors as including cancer risk reduction services, dietary services, access to physical activity and rehabilitation and behavioral health specialist referrals, the report noted.

The gaps have a few possible explanations and some potential solutions, said Alexandria Cull Weatherer, an outreach specialist with the collaborative who is first author of the study.

“Possibilities to explore include increasing awareness of this patchwork availability, increasing insurance coverage and access to survivorship services,” she said.

“While we need more research focused on what survivors want, there are many services not typically covered by insurance, so providers may be reluctant to discuss them with their patients if patients might not be able to afford them,” Weatherer said.

Weatherer and other study authors encouraged providers to have discussions based on patient needs. They also cited the need for discussions between providers and insurers to cover care that could improve outcomes and decrease the burden of cancer on the Badger State.

“Another interesting factor is the cancer center locations,” Cull Weatherer said. “Cancer centers tend to be in urban areas. Rural centers often have fewer specialists and services, or they’ll need to refer patients to larger centers in urban areas which not everyone can access.”

Wisconsin offers a unique perspective on survivorship disparities given its mix of urban and rural populations, the survey found. Non-participating sites tended to be more rural and/or not offer any survivorship services.

Survivors in rural areas face reduced access to oncology services and multi-disciplinary providers, limited clinical trial opportunities, travel barriers and higher rates of cancer-related mortality, according to the collaborative.

Gaps in survivorship care can happen in many places along someone’s journey, said Dr. Noelle LoConte, an oncologist at the UW Carbone Cancer Center in Madison and senior author of the study.

“It can happen when patients transition care from oncology to primary care,” said LoConte, an associate professor in the Medicine Department of the University of Wisconsin School of Medicine and Public Health.

“It can also stem from differing attitudes and perceptions of what cancer survivors need in and outside of a medical setting,” she said.

The study authors urged patients to talk to their providers about anything that affects their well-being even if it doesn’t seem like it could be related to cancer or might feel embarrassing.

Just under 45 percent of the 90 cancer treatment facilities in Wisconsin invited to participate in the survey responded, according to the collaborative.

The selection of cancer treatment facilities sought to provide a geographically representative sample.

Areas of interest included disciplines incorporated, services provided, standards of care and discussion of late-term effects, among others.

More information is available on the collaborative’s website.