A rising tide of neurologic impairment: Where’s the medical home for these children?

by Jay Berry on January 19, 2012

Many doctors feel unprepared to care for children with neurologic impairment. (Photo: Lindsey Hoshaw)

Jay Berry, MD, MPH, shown here with patient Kyler Quelch, is a pediatrician and hospitalist in the Complex Care Service at Children’s Hospital Boston. He leads the multi-institutional Complex Care Quality Improvement Research Collaborative.

As a general pediatrician, albeit one with experience in complex care, I find it extremely challenging to take care of children with neurologic impairment. A child’s nervous system can be “broken” for many reasons: a congenital brain or spinal cord malformation, severe head or neck trauma, a genetic condition or, like an increasing number of children, being born prematurely.

Most of the time, we can’t “fix” a broken nervous system. We can only try to support the body functions that are impaired as a result. Functions we take for granted: breathing, eating and digesting, moving, talking. We don’t have a lot of scientific evidence to guide us when doing this, so we sometimes have to try things without truly knowing what will and won’t work. I remain puzzled over how to treat asthma, pneumonia, impaired digestion, or chronic respiratory insufficiency in children with cerebral palsy.

Not only do children with neurologic impairment tend to have other health problems, but it’s also harder to spot them, and harder to tell when a problem is getting worse. It takes a sound understanding of each child’s “baseline” and close attention to each child’s communication style to recognize that something’s wrong. This is especially difficult when children can’t articulate their thoughts and feelings.

So, not surprisingly, many of these children receive substandard care. Several research studies report that many doctors feel uncomfortable and unprepared to provide good care for children with neurologic impairment. They misjudge the children’s comprehension, cognition and other developmental capabilities. They mismanage the durable medical equipment (such as orthopedic braces, feeding and breathing tubes) that patients often rely on to maintain their health. I struggle with these issues myself, and often seek help from pediatric neurologists and developmental pediatricians. Unfortunately, these specialist pediatricians are too few to get many of these children’s care on track.

Disturbing news articles report neglect and unmet health care needs in patients with neurologic impairment. Parents, who rely on multiple specialists for their children’s care, express frustration with a system that’s not adequately equipped to serve their children and where no designated provider is “in charge,” leaving them on their own to manage their child’s health information and get help at home.

All of these things contribute to the crisis-driven care experienced by children with neurologic impairment. Solid plans often aren’t in place for when they get sick. Community clinicians are often incapable or unwilling to provide urgent care, resulting in frequent emergency department visits and hospitalizations.

And once hospitalized, children with neurologic impairment tend to stay longer and use more resources than other children. Even worse, they have a higher risk or being readmitted back to the hospital over and over again within a short amount of time.

We recently did a national study that supports our impression that children’s hospitals are becoming the medical home for children with neurologic impairment. Our data, published this week, indicate that these children are using dedicated children’s hospitals more and community hospitals less, and that within children’s hospitals, they are accounting for nearly 1 in 3 dollars spent on hospital charges. Most of their hospitalizations are for non-nervous system problems, like swallowing and digestion difficulties, respiratory impairment, and musculoskeletal problems.

Children’s hospitals are the hub for access to clinicians specializing in the care of children with neurologic impairment. They’re also the home of a recent surge in care coordination programs for medically complex children. Neurologic impairment is the most common attribute of children who enroll in these programs.

This should be kept in mind as policymakers and payors compare the cost of care delivered within children’s versus community hospitals. We are committed to taking care of children with neurologic impairment – children who tend to take longer to recover from acute illnesses and surgeries, and who have complicated, expensive and time-consuming healthcare needs.

But we also need to make sure that all hospital clinicians, regardless of their specialty or type of hospital, have the skills to provide quality care to neurologically impaired children. We need to properly educate our pediatric residents so that they’ll possess these skills as they become independent practicing physicians.

And we need to proactively meet the healthcare needs of neurologically impaired children in the primary care setting and safely transition them home when they must be hospitalized. Only then will these most vulnerable citizens have the best opportunity to live a healthy and happy life.

I dedicate this post to my mentor, Raj Srivastava, MD MPH, who cares deeply for these children.

2 comments

  • Shannon Kaiser

    Great article Dr. Berry.  Having a child with a neurological impairment, I can completely relate to this article.  I’m glad that it is being recognized, I guess I just wonder what is Children’s Hospital going to do to address it?  I think its admirable to be teaching the new pediatric residents about kids like mine, but who is going to teach the current attendings that our kids can’t just be pushed to the side or that their pain and symptoms aren’t real because the child can’t communicate as well as a neuro-typical child?  Where are the inservices that teach that the parent often has a very good grasp on when there  is something wrong and that we should be listened to and taken seriously.  This has been a huge source of frustration for us as well as other families that I have spoken with.  I wish that I was wrong more often about my childs conditions, but sadly I haven’t been.  This has caused many more admissions, tests and unnecessary appointments because of a providers arrogance that they are the expert and that because I am “just a mom”, I couldn’t possibly know what is medically wrong with my child. While  I do realize that there are alot of “crazy parents”  out there,  most of us just want what is best for our child and I think teaching empathy and understanding for how well we actually know our children could go a long way…..and its free!

  • Jay Berry

    Thanks for your comment, Mrs. Kaiser.  Listening better to parents, taking their assessments seriously, and collaborating with (instead of against) them is definitely the way to go here.  I think the hospital is committed to delivering that type of patient and family-centered care.  We’ve just got to make sure that happens consistently on a one-on-one, patient-by-patient basis.  Now, doing that will not always guarantee that everyone will agree on management plans and other important decisions for these children.  The most important thing is that we bring families into the heart of the discussion, weigh all of the options, and try to do what’s best for the child.     

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