RWE study pinpoints gaps in mental health care utilization among parents of children with cancer

Unquestionably, a child’s cancer diagnosis weighs heavily on the parents’ minds. But now, an analysis of nearly 30,000 U.S. families has quantified how often parents of children with cancer use mental health services. 

Data tracking utilization of mental health services show that within a year of the child’s diagnosis, parents were more likely to seek care for issues including anxiety and depression compared to parents of cancer-free children, according to the study published April 2 in JAMA Network Open.

Previous research looking at parents’ mental health focused on self-reported survey data, said senior author Xu Ji, an assistant professor of pediatrics at Emory University School of Medicine.

But in the new study, Ji and her colleagues used the Merative MarketScan Commercial Claims Database, which provides information about private insurance claims, to investigate how many parents sought treatment. 

“This database allowed us to provide the first evidence of the ‘real world’ utilization of mental health services among parents of children diagnosed with cancer,” Ji said.  

Gaps in utilization

The analysis included 4,837 families of children ages 21 or younger treated for cancer during 2010 to 2018. The patients were matched at a 1:5 ratio to children without a history of cancer based on birth year, sex, and geographic region, for a total of 24,185 families of cancer-free children.

Looking at parents’ mental health visits revealed that 18.1% of parents used such services within a year of their child’s cancer diagnosis, while 13.3% of parents of children without cancer received mental health care. 

When examining treatment related to anxiety and depression, 10.6% and 8.4% of parents of children with cancer used services for those reasons, respectively, while 7% and 6.1% parents of cancer-free children received such care.

“They took a really innovative approach at attempting to quantify not just the extent to which parents and caregivers are struggling, but also looking at the access-related issues in terms of who are the people who are actually getting care,” said Steven Hardy, director of Behavioral Health Services for the divisions of Hematology, Oncology, and Blood and Marrow Transplantation at Children’s National Hospital. He was not involved in the new study.

For instance, mothers consistently sought treatment more than fathers. 

And among mothers of children with cancer, those in urban settings used mental health services more than those in rural settings, those with HMO or PPO plans used services more than those with high-deductible plans, and those whose children had gonadal or bone and soft tissue cancers used services for anxiety or depression, respectively, more than those whose children had hematologic cancer.

“Our aim in this study was to pinpoint any existing gaps in health services utilization, which could [point to] areas in need of future interventions or enhancements,” Ji said.  

Barriers to treatment

Overall, the authors weren’t surprised to see an increase in mental health care visits among parents of children with cancer. 

“Witnessing the symptoms, and just observing the suffering that your child is experiencing is really tough,” Ji said. 

On top of that, parents face uncertainty about their child’s future, endure financial stress, balance family and work needs, and find the time and resolve to navigate complicated health systems, she said.

“All of this put together can trigger fear and worry in parents, and can ultimately trigger new mental health symptoms or exacerbate existing mental health symptoms,” Ji said.  

Still, she expected to see an even bigger jump in mental health care use in parents of children with cancer compared to other parents. Part of the discrepancy may come from the study’s limitations, such as not capturing services paid out of pocket or through Medicaid. 

But Ji suspects that a gap exists between parents’ need for treatment and the time and money required to access treatment.

Elyse Park, a psychologist and director of the Health Promotion and Resiliency Intervention Research Program at Massachusetts General Hospital, agreed. “There are so many barriers to getting mental health treatment that are insurance related,” she said. 

Coverage for psychosocial needs is often inadequate, said Park, who wasn’t involved in  the study.

Seeking mental health appointments can be even harder for parents watching their child go through cancer treatment. “We’re always focusing on our children’s needs. And during this time, it’s very hard for [parents] to attend to their own self-care,” Park said.

Park said that while she appreciates the study, she would like to see what the parents’ utilization of mental health services looks like beyond a year after their child’s diagnosis. 

“Oftentimes, the challenges—emotional challenges, psychosocial challenges—do not come up until quite a period of time after the child’s cancer diagnosis and treatment,” Park said.

Ji said her team is working to address this research question.

After fight or flight

Formidable challenges to caregivers can materialize long after the child’s initial treatment, parents say.

“While you’re in it, you’re in fight or flight,” said Dena Sherwood, whose teenage son has survived neuroblastoma twice. “Once you’re done with it, everything starts to break down.”

Parents—especially bereaved parents—often have nowhere to go for mental health support after leaving their oncology team at the hospital behind, she said. And the prolonged trauma and stress from a child’s cancer treatment differs from other types of traumas, Sherwood said, which calls for specialized mental health services.

That’s why the non-profit Sherwood and her husband founded in 2009, Arms Wide Open Childhood Cancer Foundation, holds biannual bereavement retreats for parents whose children died and monthly virtual support sessions for parents of survivors.

“A lot of parents feel almost forgotten,” said Serena Sahajian, a grief and loss care worker at AWOCCF. And emotions can be even more complicated for parents of survivors.

“There’s a really big moral complexity with the survivorship that a lot of these parents, and even survivors of cancer, struggle with in terms of wanting to feel really grateful, but also still having so many struggles,” Sahajian said.  

For Sherwood, whose son has been cancer-free for 13 years, that includes the stress of her son’s multiple doctor’s appointments each year to deal with cancer’s aftermath, and his coming to terms with his physical differences, such as short stature, from the treatment during his childhood.

“There is not a day since my son was diagnosed—July 6, 2008—that I have not lived with cancer,” Sherwood said.