Patient Needs Survey
Two-Year Results (2017 - 2018)
These are key findings from a joint online survey conducted in both 2017 and 2018 by the Children's Cause for Cancer Advocacy and the Patient Advocate Foundation. We heard from 441 respondents, both caregivers and survivors.
Much of the new data from 2018 backs up what we learned in 2017, and we share the highlights here:
In our 2018 survey, we asked survivors to think back on their cancer treatment and whether they were as involved as they wanted to be in decisions about their care and treatment. While the majority responded favorably, one-in-five survivors answered No, and I would have liked to be more involved. By comparison, just 7 percent of parents/caregivers answered no.
When asked “In the last 12 months, how often did your general practitioner seem informed and up-to-date about the care your received from cancer specialists?” less than 40% responded that their doctor was usually, always or almost always well-informed about the survivor’s cancer care. 34 percent responded sometimes, and 28 percent responded almost never.
Approximately 30 percent of the survivors we surveyed report that they are not currently receiving regular follow-up care from a survivorship clinic. 60 percent of childhood cancer families we surveyed in 2018 either don’t have a written care plan or are unsure if they do. Follow-up care plans are a critical tool for transitioning care to adult providers and managing long-term side effects.
Among caregivers surveyed in both 2017 and 2018, one-third reported insurance denials for treatment.
The impact of those denials ranged from forcing caregivers to spend time navigating their insurance plan to requiring out-of-pocket expenses or loans and interrupting or changing the course of their child’s treatment.
Among parent/caregiver respondents, 6 in 10 reported experiencing a financial hardship over the past 12 months due to the cost of their child's medical care.
Too often, those hardships go unaddressed: We asked families if “at any point” in their child’s care they were asked about financial hardships related to food, energy or housing and 55 percent answered no.