Childhood Cancer Survey of Patient Needs: Our Key Findings

The above word-cloud shows parents' open-ended responses to the question: "In the past 12 months, which specific costs would you say contributed the most to your overall out-of-pocket expenses for the child/survivor's treatment or care?" The bigger the word, the more often it appeared in the caregivers' responses.

The above word-cloud shows parents' open-ended responses to the question: "In the past 12 months, which specific costs would you say contributed the most to your overall out-of-pocket expenses for the child/survivor's treatment or care?" The bigger the word, the more often it appeared in the caregivers' responses.

We conducted a survey this spring with the goal of better understanding the financial hardships and insurance challenges facing childhood cancer families and survivors. We're learning a lot from the results, and we want to share some of the things that really stood out to us.

Thank you to everyone who participated in this joint initiative of the Children's Cause and the Patient Advocate Foundation. Your input makes us better advocates on Capitol Hill for families and survivors around the country. We heard from 343 respondents, with fairly even representation from parents/caregivers (42% of respondents) and teen/young adult survivors (45%). 

Let's dive in to some key findings:  

HEALTH INSURANCE

91% of children and survivors that we surveyed currently have health insurance -- which means approximately one in ten do not. Furthermore, even for those who are insured, there are some big coverage issues at play -- like one-third of parents reporting their child's treatment was denied by their health insurance carrier at some point in time.

As reported by parents, the top reasons given for denial of coverage include: care deemed "not medically necessary;" therapy was experimental (i.e. clinical trial); therapy or test not covered; and out-of-network physicians or facility. One parent elaborated: "We appealed successfully in each instance, but it took a great deal of effort and energy."

FINANCIAL HARDSHIP

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. Of those who have experienced a recent hardship, over one-third categorize their hardship as "extremely severe, unable to manage."

Notably, 87% of parents surveyed reported difficulty maintaining a regular work schedule over the past year due to their child's treatment demands. Nearly half - 46% - reported that one or two family members stopped working to care for their in-treatment child over the past 12 months. (Of the parents we surveyed, 80% were employed full-time in the month before their child's diagnosis -- just 39% of those parents are currently employed full-time).

While approximately one-third of parents report being debt-free, 28% currently owe at least $10,000 towards healthcare costs related to their child's cancer treatment. Six percent of parents have at least $50,000 in outstanding medical debt.

Nearly half of the parents we surveyed reported spending more than 20 hours per week caring for their child's needs related specifically to their cancer treatment and care. Parents frequently encountered difficulty with balancing other family responsibilities, meeting transportation costs, and scheduling childcare for their other children. One parent added the heartbreaking comment: "Both of our cars were repossessed and we couldn't buy Christmas gifts for the kids."

SURVIVORSHIP CHALLENGES

"My appointments take place over 1500 miles from my front door. My parents and I fly to every checkup, quarterly or semiannually." - young adult survivor

Among survivor respondents, 40% reported difficulty maintaining a regular work schedule over the past year, with 16% taking unpaid time off for their treatment or survivorship care. One-in-five young adult survivors had to stop working or reduce their hours over the past 12 months to manage their care.

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A 17-Page Summary (PDF) →

If you missed the opportunity to weigh in on this round, stay tuned:  we'll be conducting more of these surveys moving forward in order to keep growing our knowledge and our data.