The current status of survivorship care provision at the state level: a Wisconsin-based assessment

Abstract

Purpose As the number of cancer survivors grows, the responsibility for addressing their unique physical and emotional needs also increases. Survivorship care services vary by geography, health system, and insurance coverage. We aimed to understand the state of survivorship care services in Wisconsin’s cancer facilities. Methods 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. Results Out of 90 sites invited, 40 responded (44.4%). Oncologists, physician assistants, and nurse practitioners were the most common follow-up care disciplines. Risk reduction services, dietary services, access to physical activity, and behavioral health specialist referral were described as standards of care in less than half of sites. All sites reported working with community partners, 92.5% of which worked with YMCA-related programs. Discussion of long-term effects was a standard of care for all sites. Effects such as emotional distress and health practice changes were frequently discussed with almost all patients, while sexual functioning and fertility were not. Conclusions Services and specialties related to behavioral health, fertility/sexual health, and rehabilitation and physical activity varied between sites. Such services may be offered less often due to variable insurance coverage. Implications for Cancer Survivors Policy solutions should be explored to increase insurance coverage and provision rates of necessary survivorship services to keep up with the projected increase in demand. Given imperfect and evolving measurement tools to assess needs for cancer survivorship care services, cancer survivors should feel empowered to voice when they have unmet needs and request referrals. Supplementary Information The online version contains supplementary material available at 10.1007/s11764-021-01117-4.

Myths and Presumptions About Cancer Survivorship

“…6 In fact, few studies provide details of reimbursement for survivorship visits, although a growing literature describes barriers to adequate reimbursement for managing physical, social, and emotional side effects or care coordination. 6,54-57 A recent publication included a quote from a cancer center key informant that, “we're not able to get insurers to pay for survivorship visits”; this comment was later clarified as focusing on the lack of reimbursement for preparing treatment summaries and care plans. 55 Similarly, a study describing survivorship clinics in Wisconsin suggested that mental health services, exercise/lifestyle services, sexual health, and fertility counseling were underrepresented at survivorship clinics because of lack of adequate insurance coverage of these services.…”

“…55 Similarly, a study describing survivorship clinics in Wisconsin suggested that mental health services, exercise/lifestyle services, sexual health, and fertility counseling were underrepresented at survivorship clinics because of lack of adequate insurance coverage of these services. 57 Yet, profit or reimbursement was not directly evaluated.…”