SHARE Project Explores Patients’ and Parents’ Pediatric Palliative Care Experiences

Parents of children who live with serious illness often describe their experiences as being on an unfolding journey. Pediatric palliative care teams are specially trained to help families facing a life-shortening illness navigate these daunting twists and turns.

More than 100,000 children in the U.S. living with life-shortening conditions could potentially benefit from pediatric palliative care, which broadly helps with three things: 1) pain and symptom management through medical and psychosocial interventions, 2) decision-making support, and 3) coordination of care across the continuum of healthcare settings. All three of those areas can be better informed with reliable research data, according to Chris Feudtner, MD, PhD, MPH, director of the department of Medical Ethics at Children’s Hospital of Philadelphia and director of Research for the Pediatric Advanced Care Team.

Dr. Feudtner, who also is a professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania, has seen remarkable growth over the last 15 years in the establishment of pediatric palliative care teams within hospitals, but there has been substantially less progress for robust research in the field. One of the challenges to pediatric palliative care research is that no one hospital is likely to have a sufficient number of children with a particular condition to be able to fully explore epidemiologic and health services questions. That is why four hospitals that are part of the Pediatric Palliative Care Research Network (PPCRN) are launching an innovative multicenter project called SHAred Data and REsearch (SHARE).

CHOP, Boston Children’s Hospital, Seattle Children’s Hospital, and Children’s Hospitals and Clinics of Minnesota all have “remarkably good” pediatric palliative care programs, Dr. Feudtner said, and they will collaborate to build a standardized and organized infrastructure to collect and merge patient- and parent-reported clinical data with hospital administrative data into a SHARE database. The resulting dataset will provide a wealth of information regarding hospital-based care for a cohort of 800 patients receiving pediatric palliative care, including patient demographic and diagnostic information, patient or parent reported symptoms, and parent reports on their levels of distress and how their goals of palliative care change as their child’s serious illness progresses.

“We will follow them over time to identify distinct patterns of how things play out, and how those patterns affect the ways that they think about making decisions for their child,” Dr. Feudtner said. “All of this will hopefully improve the care the kids get and the outcomes for them, their parents, and family members.”

For example, he pointed out that researchers don’t have much data yet on how long a typical pediatric patient receives palliative care, although previous CHOP research suggests that it is for more than a year. They also know little about the symptoms these children experience, such as pain, nausea, shortness of breath, fatigue, and depression. They know even less about how these symptoms may vary over time and which ones tend to break through despite clinicians’ best efforts to manage them. Once SHARE helps to gather information about these key aspects of pediatric palliative care, then researchers can figure out the effectiveness of specific interventions to ameliorate suffering and reduce symptoms.

Another area that SHARE researchers plan to study is how families in the midst of such a tumultuous time contemplate how to best care for their children. Previous studies conducted by Dr. Feudtner and colleagues have focused on the roles that emotions and sense of duty play in parental decision-making, along with families’ thoughts on how their child is doing medically. Several themes have emerged from that research that suggest as a seriously ill child’s condition worsens, some parents tend to re-evaluate their initial set of curative goals and replace them with a set of more attainable goals such as keeping their child comfortable. Researchers call this combined psychological and social process “regoaling.”

“We have people devoted in our pediatric medicine ranks — social work, psychology, ethics, and other areas — to help support parents with the decisions that they’re facing,” Dr. Feudtner said. “But what is the best way to do that? We have a lot to learn.”

In Dr. Feudtner’s experience, families welcome the opportunity to participate in pediatric palliative care research because it allows them to represent what they’re going through in a meaningful way. Families who join the SHARE study will, with the assistance of interviewers, complete a series of questionnaires when they first join the cohort, and then participate in follow-up interviews every six months for a total of two years.

Dr. Feudtner expects that the collaborative SHARE project will be a catalyst for many future studies using the SHARE data and research infrastructure. He envisions large multicenter studies could be accomplished to perform intervention research — such as drug treatment studies or evaluating bundled therapies for symptom control  — and quality improvement work within and across hospitals — such identifying the best care delivery model to transition patients seamlessly from hospital to home care.

“I would hope that the legacy of the project, looking back on 10 years in the future, would be that we have deepened our understanding of the ability of interventions that are in the palliative care continuum to improve the well-being or reduce potential suffering of a child and also how they affect the well-being or suffering of a parent,” Dr. Feudtner said.

For families embarking on the palliative care journey, such evidence-based strategies can lend valuable insights to help guide them toward compassionate and knowledgeable end-of-life care for their children.

SHARE’s other multi-principal investigator joining Dr. Feudtner is Joanne Wolfe, MD, of the Dana-Farber Cancer Institute and Boston Children’s Hospital; site investigators include Ross Hays, MD, of Seattle Children’s Hospital; Stefan Friedrichsdorf, MD, of Children’s Hospitals and Clinic of Minnesota, and Pamela Hinds, PhD, RN, of Children’s National Health System.

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