First cancer survivorship care survey in Wisconsin

Madison, Wis. — 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.

To understand the resources available to meet those needs, the Wisconsin Cancer Collaborative recently completed the first survey of its kind examining the care services offered to cancer survivors in Wisconsin’s cancer facilities. Results were published in the Journal of Cancer Survivorship.

A cancer survivor is defined as anyone who has ever been diagnosed with cancer no matter where they are in the course of their disease. Thanks to treatment advances, the number of cancer survivors is growing – as are their unique and complex needs.

Of the 40 centers that participated in the survey, all centers reported working with community partners, and the centers’ standards of care included discussions with survivors about the long-term effects of cancer. However, researchers identified several opportunities for expanded services. For example, while effects such as emotional distress and medical changes were discussed with most patients, sexual functioning and fertility were not.

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.

These gaps have a few possible explanations, and some potential solutions, according to Alexandria Cull Weatherer, outreach specialist, Wisconsin Cancer Collaborative, and first author of this 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.”

Study authors encourage providers to have discussions based on patient needs, but also encourage conversations between providers and insurers to ensure any care that could improve outcomes and decrease the burden of cancer on the state of Wisconsin be covered.

“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. 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.

Gaps in survivorship care can happen in many places along someone’s journey, according to Dr. Noelle LoConte, oncologist, UW Carbone Cancer Center, associate professor, Department of Medicine, University of Wisconsin School of Medicine and Public Health, and senior author of this study.

“It can happen when patients transition care from oncology to primary care,” LoConte said. “It can also stem from differing attitudes and perceptions of what cancer survivors need in and outside of a medical setting.”

Authors encourage patients to talk to their providers about anything impacting their wellbeing, even if it doesn’t seem like it could be related to cancer or might feel embarrassing.

Researchers invited 90 cancer treatment facilities in Wisconsin to participate in the survey, of which 40 (44.4%) responded. The selection of cancer treatment facilities sought to provide a geographically representative sample. An adapted Patient-Centered Survivorship Care Index was comprised of questions regarding different aspects of survivorship practices. Areas of interest included disciplines incorporated, services provided, standards of care, and discussion of late-term effects, among others.

For more information, visit wicancer.org/cancer-plan.