Parents want more financial counseling about kids’ hospitalization costs, study finds

Three-quarters of parents whose children are hospitalized want to talk to a hospital staff member about the projected cost of their child’s medical care, but less than 10% of families have such conversations, according to a new study led by Stanford Medicine researchers.

The study’s authors said their finding boosts the argument that patients and their families need better access to financial counselors at hospitals.

The study, which was published Sept. 21 in JAMA Network Open, is the first large assessment of parents’ preferences about receiving financial counseling when their children are hospitalized. The research team surveyed 526 parents of inpatients at six pediatric academic medical centers across the United States.

“Part of what we hope this paper will do is to serve as a wake-up call to say, ‘We have to better counsel families on the anticipated cost of their child’s care,’” said Hannah Bassett, MD, a clinical assistant professor of pediatrics and the study’s lead author.

U.S. medical system pricing is complex, making it difficult for patients and families to predict what hospital care is likely to cost them. The cost is often unclear to physicians, too. But hospital financial counselors can help estimate out-of-pocket costs by considering many factors — including treatments prescribed, the patient’s insurance coverage and such circumstances as whether a family’s annual deductible has been met. Only 7% of families in the study had a conversation with a hospital staff member about costs during their child’s stay.

Mismatch between communication and concern

Prior studies of patients’ concerns about medical costs have focused on care for adults with cancer. Most cancer patients want to have advance conversations about the costs of their treatments, research shows, and many oncologists facilitate such conversations. But very little research has explored cost concerns among other populations.

The new study focused on parents of children whose hospital stays were nearly over. These parents completed detailed questionnaires about what they wanted to know regarding the costs of their child’s care, when and with whom they wanted to discuss these costs, and perceived barriers they had to discussing the topic. In addition, they were asked to describe any cost-related conversations they had during their child’s hospitalization.

The researchers requested information about parental income and education levels; family members’ race and ethnicity; financial matters, such as whether a family had existing medical debt or other financial struggles; whether the patient had public or private insurance; and the amounts of their insurance deductibles. They also collected basic information about the child’s hospitalization, including length of stay and whether the child was in an intensive care unit.

In addition to finding that 76% of families wanted to have conversations about medical costs, the research team saw that 75% of families were concerned about how much their child’s hospitalization would cost them. This included 32% who were moderately or very concerned.

Forty-nine percent of parents surveyed reported wanting doctors to consider costs when making medical decisions for their child, while 35% did not want doctors to consider the cost of treatments. About half of parents said they wanted to have cost conversations before their child received tests and treatments, whereas 10% said they never wanted to have these conversations.

“It was interesting that there were opposite poles,” said the study’s senior author, Alan Schroeder, MD, a clinical professor of pediatric critical care and of pediatric hospital medicine. “There are quite a few people who want to talk about cost, but a nonzero proportion that really do not. For the latter, we need to further explore the barriers and determine whether there are any acceptable approaches to cost discussions. In the meantime, hospital staff should begin any cost conversations by simply asking parents if they are interested in more information.”

The research team found that the severity of a child’s illness and the characteristics of a family’s financial situation — such as their levels of income or medical debt — could not predict whether they wanted to discuss costs.

“That was surprising,” Bassett said. “This is a fairly widely held preference, and an important topic for anyone, regardless of their sociodemographic characteristics or the clinical characteristics of their child.”

Many families appeared to be unsure when or how to ask for the financial information they needed: Only 30% of study participants could recall a specific time during their child’s hospitalization when they wanted to have a conversation about costs, likely because such conversations have not traditionally been a part of the existing culture of medicine, the researchers said. 

More to learn

The researchers plan to continue studying preferences about cost conversations in other settings such as in emergency departments, where patients with high-deductible insurance plans are especially vulnerable to unpredictable costs.

They hope the new data will help convince leaders, administrators and clinicians within the medical system to offer upfront conversations about costs to families of hospitalized children. Part of the challenge is that physicians typically don’t have the information at their fingertips to determine a patient’s out-of-pocket cost.

“As a doctor, I have a ballpark idea that an MRI costs more than an ultrasound, but there are so many factors that trickle down to a family’s bill — their deductible, their copay, if they have coinsurance, whether they’ve hit their yearly maximum and so on — that even if I know in general what something costs, it’s nearly impossible to give an accurate estimate to a family,” Bassett said.

While some doctors believe that conversations about costs could be uncomfortable, in the United States, where patients have to pay for their care, most patients and their families are eager for the information, Schroeder said.

“Physicians and patients are completely disconnected from the cost of care,” Schroeder said. “This research is one step toward better understanding that disconnect and remedying it.”

Biostatistician Kristopher Kapphahn is another author of the paper from Stanford.

Scientists from Seattle Children’s Hospital; the University of Wisconsin School of Medicine and Public Health in Madison; Primary Children’s Hospital, University of Utah in Salt Lake City; Boston Children’s Hospital, Harvard Medical School; Children’s Hospital Colorado, University of Colorado-Denver; Cincinnati Children’s Hospital Medical Center, University of Cincinnati; and Texas Children’s Hospital, Baylor College of Medicine in Houston, also contributed to the work.