New standards outline the psychosocial supports that all pediatric oncology sites should offer.
When 6-year-old Mattie Brown complained that his arm hurt, his parents assumed that he had injured himself at tennis camp. Then a routine trip to his pediatrician — plus X-rays and other diagnostic testing — revealed he had bone cancer.
For more than a year, Mattie endured chemotherapy and surgeries that left him in a wheelchair and fitted with prostheses. But his problems weren't just physical. Despite the efforts of his mother, who has a doctorate in counseling, he was also diagnosed with depression, anxiety and medical post-traumatic stress disorder. Just over a year after his initial diagnosis, he died.
Determined to keep the memory of their only child alive, Victoria Sardi-Brown, PhD, and her husband, Peter, created the Arlington, Virginia-based Mattie Miracle Cancer Foundation to push for improved psychosocial care for children like Mattie. Now the foundation has achieved a major goal: the publication of the first national standards for the psychosocial care of children with cancer and their families.
Led by social worker Lori Wiener, PhD, of the National Cancer Institute, plus psychologists Mary Jo Kupst, PhD, Andrea Farkas Patenaude, PhD, Robert B. Noll, PhD, and Anne E. Kazak, PhD — all five of them fellows of APA's Div. 54 (Society of Pediatric Psychology) — a multidisciplinary group of experts drew on the research to establish standards of care for psychosocial support in pediatric oncology (see sidebar).
The standards could do more than just improve care at hospitals around the country. They could also help convince Medicaid and other insurers of the need to reimburse psychologists and other licensed mental health professionals for the psychosocial care the standards recommend, according to Sardi-Brown.
"Unless psychosocial issues are dealt with, medical care can't be as effective as it should be," she says. "We're clearly behind the need for medical research and drug development, but that's going to take years. Psychosocial support is something that can be implemented today."
Compiling the evidence
Although extensive research documents the psychosocial risks children and their families face during and after cancer treatment, that research hasn't necessarily been incorporated into pediatric cancer care. As a result, whether patients and families receive adequate support often depends on what pediatric cancer facility they end up in or what insurance they have.
Sardi-Brown and her husband began working to solve that problem in 2012, when their foundation sponsored a congressional briefing. Five experts — Kazak, Noll, Patenaude, Wiener and psychologist Kenneth Tercyak, PhD — joined childhood cancer survivors and parents in stressing the need for support. But that wasn't enough, says Kupst, an emerita professor of pediatrics at the Medical College of Wisconsin and one of the lead authors of the standards.
"At the briefing, people were very nice as always but said, ‘We need more evidence,'" says Kupst. "That was the impetus for doing this in a way that hadn't been done before — to do a very rigorous evaluation of the research in this area and develop standards."
Kupst and a multidisciplinary group of more than seven dozen other health-care professionals — most of them psychologists — spent the last three years doing just that, with support from Mattie Miracle. After reviewing more than 1,200 studies, the group produced 15 evidence- and consensus-based standards for services that are essential for all children with cancer and their families.
The standards call for systematically assessing children's psychosocial needs, preparing them for invasive procedures, monitoring adherence to treatment and ensuring access to support and interventions throughout the disease's trajectory, for example. Children with brain tumors should receive monitoring for neuropsychological problems, the standards state, while long-term survivors should receive yearly screening for educational, social and psychological problems. There are also standards focused on family members, which call for ongoing monitoring of their mental health needs, supporting siblings and assessing families' risk of financial hardship.
The emotional aspects of dealing with cancer can fall through the cracks, says Patenaude, another lead author of the standards.
"Families are immediately quite overwhelmed just taking physical care of their children," says Patenaude, a psychologist at the Dana-Farber Cancer Center and an associate professor of psychology at Harvard Medical School. "And it's not just the child who's having the hard time. Parents, siblings, grandparents and other family members are all struggling with emotions they might not have encountered before."
Psychologists and other mental health professionals help families overcome trauma and increase resilience during what is typically the multiyear — even lifetime — process of dealing with cancer, says Patenaude. They also help families communicate effectively with medical staff. "When there's not much psychosocial support, a lot of emotion can get funneled toward staff, which makes relationships between families and staff challenging in ways they don't have to be," she says.
Psychosocial care shouldn't stop after a child's death, according to the standards. One standard calls for contacting families to assess their needs, check for problems and offer bereavement resources.
The experts behind the standards also hope that they will spur research. "My hope is that the standards not only improve clinical service but that people will look at the standards, see holes in the literature and decide, ‘This is a place where I could really move my career and answer some questions,'" says Noll, a professor of pediatrics, psychiatry and psychology at the University of Pittsburgh and another of the lead authors.
For example, says Noll, there is little research in the important area of how to help school-aged children with cancer ease back into school after their diagnosis and treatment. "People just haven't researched it," he says.
Putting recommendations into practice
The publication of the standards is only a first step. One next step will be to seek endorsements from key organizations in the pediatric oncology field. The Society of Pediatric Psychology has already given its endorsement.
The group will also be assessing what services pediatric cancer sites are already offering. "As a baseline, we want to find out what the psychosocial teams look like in all the centers, what they're doing and how close they are coming to the standards," says Kazak, co-director of the Nemours Center for Healthcare Delivery Science at the Nemours Children's Health System in Wilmington, Delaware, and another of the lead authors.
Once it's clear what people are already doing, the standards group could help sites put the recommendations into practice. The standards are intentionally non-specific, adds Kazak. "We didn't want them to be prescriptive, to say, ‘You must give measure x within y number of days,'" she says. Because there are many ways to meet each standard, she says, the group hopes to eventually help sites comply with the standards.
The project's ultimate goal is to improve care for children with cancer and their families through the provision of services that embody these standards, says Kupst. "We want to increase access by having some ‘teeth,'" she says. "If it's the standard of care, then [insurance companies] really need to provide reimbursement for it."
The group hopes the standards will convince Medicaid and private insurers to cover the services outlined in the standards. Another tactic could be to make achieving the standards a requirement for hospital accreditation.
For Mattie's parents, the effort is a way to find meaning in the loss of their child and to keep his memory alive.
"We always reflect on Mattie's experiences and use them as a guide and driving force to help other children and families in the future," says Sardi-Brown. "We feel strongly that the way we can do that is through psychosocial support."
By Rebecca Clay
- This article was originally published in the May 2016 Monitor on Psychology