Akron Children’s earns $1.3M to improve pediatric palliative care

The NIH grant will give affected youngsters a voice in their care

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

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Akron Children’s Hospital in Ohio has been awarded $1.3 million to optimize palliative care practices for children living with chronic diseases such as spinal muscular atrophy (SMA).

The funding comes from the National Institute of Nursing Research (NINR), part of the U.S. National Institutes of Health (NIH).

Palliative care refers to an interdisciplinary approach aimed at boosting life quality and minimizing suffering for people living with serious and chronic medical conditions.

Led by Daniel Grossoehme, a senior scientist at Akron Children’s Rebecca D. Considine Research Institute, researchers will engage with young people receiving palliative care at U.S. institutions as a way of informing the development of better practices.

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“Our mission is to ensure that children of all ages with life-threatening conditions receive the highest quality care possible, wherever they are,” Sarah Friebert, MD, founder and director of Akron Children’s Haslinger Family Pediatric Palliative Care Center, said in a press release.

“To honor this commitment means to hear directly from those we serve, to design and sustain care paradigms that allow them to live their best lives. Clinical practice guidelines have evolved to advance the science of palliative care as the field has grown, but the direct voice of the involved child is missing,” Friebert added.

Outcomes from the study may directly benefit the nearly two million children in the U.S. who have illnesses that shorten their lifespan, about 5,000 of whom are within their final six months of life.

At Akron Children’s and other pediatric institutes, most children who require palliative care have neurological disorders, such as SMA or muscular dystrophy, or other genetic conditions.

“These are conditions which are long-term, if not life-long, and negatively impact life for the child and the whole family,” said Grossoehme. “That’s the palliative care piece — how to improve or maintain that quality of life.”

But current guidelines for palliative care or home-based hospice — a form of palliative care focused on end-of-life comfort — were formulated with adults in mind, according to Grossoehme.

Urgent need

“There is an urgent need to better understand the experiences of the children and teens receiving this care,” said Grossoehme. “Our central hypothesis is that pediatric patients have perspectives and words to describe important aspects of their care that differ from those of their providers and caregivers.”

Moreover, current practices are based on parent and caregiver perspectives that predate the COVID-19 pandemic, and thus don’t represent the way perspectives may have evolved over the past few years.

The research team will conduct up to 88 semi-structured interviews with children, teens and young adults, ages 11-26, who are receiving palliative care. The interviews will concern these young patients’ priorities, goals, and values. Patients also will be asked about end-of-life decisions, as well as when and how they want information to make those decisions.

Insights gained from those interviews will be integrated with caregiver and healthcare provider perspectives to develop new best practices for pediatric palliative care.

Those practices, such as symptom management, decision-making support, spiritual and psychosocial care, ultimately will help to make sure that children and their families suffer as little as possible.

The NINR, which funded the research, also is particularly interested in gathering data from medically-underserved and diverse populations in order to reduce pediatric health disparities that exist across geographical location, socioeconomic status, race, and sex.

Other hospitals involved

Participating institutions include Akron Children’s, Nationwide Children’s Hospital in Columbus, Cincinnati Children’s Hospital, Texas Children’s Hospital, and Rady Children’s Hospital in San Diego, California.

The work “is innovative, insightful and game-changing,” according to Michal Forbes, MD, a chief academic officer at Akron Children’s. “This type of research grant … from the NIH is considered one of the highest in academia, awarded to less than 20 percent of the applicants. As a result, this work is considered the ‘best of the best.'”