Akron Children's Hospital is leading a nationwide grant-funded study looking to develop a set of best practices for children, teens and young adults in palliative care. The hospital has received a three-year $1.3 million grant from the National Institutes of Health and Nursing Research to conduct the study.
Palliative care addresses how to move forward with managing symptoms and pain from a serious illnees and aims to help people have the best quality of life while living with the illness, said Dr. Daniel Grossoehme, a senior scientist in Akron Children’s Rebecca D. Considine Research Institute and principal investigator.
“And [it] help[s] people identify kind of what's most important to the teenager, to the family, so that whatever the care is is really kind of furthering their own goals for living with this disease,” Grossoehme said.
Akron Children’s will work with four other children's hospitals nationwide, including Nationwide Children’s Hospital in Columbus, Cincinnati Children’s Hospital, Texas Children’s Hospital in Houston and Rady Children’s Hospital in San Diego.
A child or a parent of a child who received hospice or palliative care at home at one of the five sites is eligible to participate in the study, Grossoehme said. They are also looking to include people from understudied populations, he said.
“We want to particularly recruit people from a couple of groups, and those are people who are living in a rural county, adolescent women, adolescents who are covered primarily by public insurance and persons who identify from a sexual and gender minority group,” Grossoehme said.
They are also hoping to get enough participants to see if there are care differences based on age and race.
"Does high quality care look different when you're 11 or 12 than it does when you're 24?,” Grossoehme said. “And we also would like to recruit enough from a variety of races so that we can also look and kind of tease out if there are any racial differences as well, rather than just sort of assuming one size fits all culture.”
The current national consensus guidelines for palliative and hospice care are adult centered. This sort of care for pediatrics needs more explicit and modified guidelines, Grossoehme said.
“They, of course, didn't talk to teenagers or adolescents who are themselves receiving hospice and palliative care, and there's also not as much input from parents of children of any age getting home-based hospice or palliative care,” Grossoehme said. “And so, this is an attempt to go out and develop voice for the adolescents who are receiving home-based hospice and palliative care and understand what makes for high quality care for them.”
There was data developed from parents and clinical providers five years ago, but this gives the opportunity to see if the data is still valid in a “new, somewhat post-pandemic world," Grossoehme said.
“We want to take the perspectives from the adolescents, from parents and from providers and see if there's enough commonality that we can integrate all three perspectives into a single set of domains or guidelines about what constitutes high quality, home based hospice and palliative care for pediatrics,” Grossoehme said.
The study will likely have impacts nationwide.
“What's really expected to come out of this is a proposed set of guidelines for pediatric home-based hospice palliative care that we hope will inform larger national organizations' guidelines and other health policymakers,” Grossoehme said.
The two most commons illnesses in pediatric hospice and palliative care are a genetic or chromosomal condition that patients were born with or a neuromuscular condition, Grossoehme said.
Palliative care is different than hospice care, which generally means the patient has less than six months to live.
“It’s really a matter of how do you live well with a serious disease, as opposed to focusing only on a disease that will probably take your life in the near future,” Grossoehme said.
