Imagine your small child was admitted to the pediatric intensive care unit after a car accident and had suffered severe brain trauma. As you enter the room, you hardly recognize her swollen bandage-covered body which is partially hidden behind IV poles and monitoring equipment.
The doctor tells you she’s in a medically induced coma so her brain can try to heal. Her breathing is entirely controlled by a machine connected to her frail body by a tube in her mouth. And her blood pressure is so low that without strong medicines her heart might stop beating.
Now imagine if you knew that the current guidelines for managing pediatric head trauma are not supported by gold standard methods (randomized, controlled trials). Sadly, we have no therapies proven to improve outcomes. The recommendations doctors like us follow for in these cases are woefully inadequate to care for the almost half a million children age 0 to 14 years afflicted by head trauma each year.
Scared about the future, you ask the doctor to give you an opinion about your child’s prognosis. But all you hear is that there is no scientifically accurate information about the kind of life she may lead, if she survives, or how to best approach rehabilitation that will optimize her outcome.
Sadly, as pediatric intensive care unit physician-scientists with 30 years of combined clinical and research experience, this describes just one of the many life-changing scenarios that we deal with daily.
The House Appropriations Committee recently proposed cutting funds to the Agency for Healthcare Research and Quality by 16 percent. Their fiscal year 2017 Labor, Health and Human Services funding bill would also rescind funding for the Patient-Centered Outcomes Research Trust Fund, the major funding stream for the Patient-Centered Outcomes Research Institute. In addition they propose to prohibit funding for any patient-centered outcomes research.
Congress needs to vote before implementing such changes, but we find these potential cuts alarming.
We take care of all children beyond the newborn period who require intensive care. Our patients are the sickest children in the hospital. Unfortunately, our ability to provide the best care possible for these children is limited by huge gaps in scientific knowledge that can only be filled by well-funded and rigorously conducted research.
On any day, we could be caring for a child with cancer admitted to the pediatric intensive care unit because of a blood infection that caused his blood pressure drop dangerously. We call this sepsis, a medical condition afflicting 72,000 children annually in the U.S.
In the adjacent room there may be a child with liver failure awaiting a transplant, a child who suffered an unexpected brain bleed, or an infant unable to breathe as the results of an ordinary virus the she picked up in day care.
Up to half the patients in our intensive care units have long-standing debilitating conditions like seizures or cancer. Approximately 2-4 percent of the children we care for will die. More than 5 percent will suffer functional or cognitive disability as a result of their illness. Regular testing for disability following pediatric intensive care stays is not routine despite growing evidence demonstrating increased frequencies and effects on family and patient quality of life.
Much of the care delivered to the 480,000 children admitted to these units annually is not supported by research-proven evidence. Despite the urgent need, the current climate of inadequate funding poses a huge barrier to advancing care for the country’s sickest children through research.
Of course we realize there are some funds available for PICU-focused research.
The National Institutes of Health supports the Collaborative Pediatric Critical Care Research Network, a network designed to pursue well-designed collaborative clinical trials and meaningful descriptive studies in pediatric critical care medicine. Unfortunately, the network only includes 7 centers, half the size of a similar NIH supported network for newborns.
The NIH also supports the Pediatric Critical Care and Trauma Scientist Development Program which funds efforts by junior pediatric critical care medicine physician-scientists who need time to gain research experience. In fact, our careers have personally benefitted from this generous program.
Most recently the NIH created the new Pediatric Trauma and Critical Illness Branch to focus on research, education, and training in childhood trauma, injury, and critical illness. We applaud these efforts but much more financial support is needed to fund the innovative work of upcoming clinician-scientists and improve the lives of children and their families.
We also realize that the recently proposed house budget would not cut all government funded biomedical research. The proposed house bill includes an increase in funding to the National Institutes of Health by $1.25 billion to a total of $33.3 billion. But even these proposed changes fall short of 22 percent loss in funding to NIH from 2003 to 2015. And very little of this additional money is likely to trickle down to the children in the PICU.
Beyond government funding, there is a need to enhance foundation support and philanthropy for critical care research. Too often donors turn to disease specific organizations, like the American Cancer Society, or the Epilepsy Foundation, when considering financial contributions.
Certainly, these are vitally important areas of research. But disease-specific philanthropy leaves a field like critical care, which provides care for all medical and surgical problems, in a philanthropic wasteland.
Of course, conducting successful research in the PICU is not solely tied to funding. Other challenges need to be addressed.
The heterogeneity of diseases treated in the PICU often necessitates involvement from multiple hospitals and sometimes countries in order to enroll enough study participants to make meaningful conclusions. This requires large scale cooperation among multiple centers.
Obtaining consent for research from emotionally exhausted and anxious parents in the PICU can be logistically and ethically challenging. And pediatric critical care physicians struggle to find time for conducting clinical research as institutional demands require they devote increasing time to revenue generating pursuits.
While more funding is not the only solution, it is a necessary start. And the future success of the field hinges on how that funding is allocated. We need to ensure that funding is directed across the continuum of investigators, from new clinician-scientists to mid-level researchers to more experienced people engaging in large network research.
We need to rethink how we allocate and spend our money. Our sickest children deserve better.
Dr. Kelly Michelson is a physician, Associate Professor of Pediatrics and Director of the Center for Bioethics and Medical Humanities at Northwestern University's Feinberg School of Medicine, and a Public Voices Fellow with The OpEd Project.
Dr. Ericka Fink is a physician, Associate Professor of Critical Care Medicine and Associate Director for the Safar Center for Resuscitation Research at the Children’s Hospital of Pittsburgh of UPMC.
The views expressed by Contributors are their own and not the views of The Hill.