Do Survivors of Adolescent and Young Adult Cancer Value Follow-up Care? A Pilot Study using the Willingness to Pay Method

Background: Survivors of adolescent and young adult (AYA) cancer, diagnosed at 15 to 39 years of age, require life-long medical care to manage late effects (e.g. cardiovascular complications) that can develop due to exposures to treatment therapeutics. Research demonstrates that AYA survivors often forego follow-up care, and healthcare cost is a known barrier. Yet, survivors’ valuation of follow-up care has not been investigated. This is important since decisions regarding follow-up care may be influence by survivor-specific values associated with recommended care. We conducted a mixed methods study to examine AYA survivors’ willingness to pay (WTP) for follow-up care and the determinants of WTP. WTP, a measure of value, is the dollar amount that individuals are willing to forego to receive/use a service.

Methods: Survivors currently ages 18 years and older who were diagnosed between the ages of 15 and 39 and had completed their primary therapy were identified by the statewide Utah Cancer Registry. A randomly-selected sample of 200 survivors were identified. Of these, 64 agreed to be contacted and 32 participated. We conducted 6 focus groups and 4 interviews from April-August 2015. All participants completed a mini-survey and responded to WTP questions; 28 participated in focus groups to discuss the value of follow-up care. A double-bounded format was used to elicit participants’ WTP for one-time payment as well as monthly contributions toward a health plan that would cover annual follow-up visits. Focus group transcripts were coded by 2 researchers (percent agreement=97.8%). An interval regression estimated mean/median WTP and identified factors associated with WTP.

Results: At least 1 day of poor physical health in the previous month was reported by 45% of participants. Yet, 40% reported having no routine medical visits in the previous year. Focus group themes suggested that survivors valued routine follow-up care for early detection and management of health conditions, although personal responsibilities (e.g., college/work/family) often led to lower utilization over time. WTP measures revealed that survivors were willing to pay more toward a monthly plan ($50 per month, 95% Confidence Interval (CI): 32-76 (summing to $600 annually)) than for one-time payment ($357 annually, 95% CI: 255-573). For both the annual and monthly plans, female survivors had a higher WTP than male survivors. Other factors such as self-reported health status and time since last visit also affected WTP. Over 50% of participants refused to pay one-time out of pocket payment for annual follow-up visits citing reasons including not having enough money, costly care, and ineffective follow-up care.

Conclusions: We find that many survivors of AYA cancer skip regular follow-up care. Yet to date, reasons for this care gap have not been adequately investigated. Our results reveal that survivor valuations depend on payment mechanisms for follow-up care and that survivors care about the effectiveness of recommended care. Perhaps healthcare facilities for AYA survivors should examine the effectiveness of alternative and flexible payment models (e.g., medical home model, pay for performance, and monthly payment plans) in an attempt to help vulnerable survivors receive recommended care in a timely fashion.