The plight of children with chronic illness...

We have millions of chronically ill children in this country. Most of us assume that childhood is a carefree time of playgrounds and soccer games. Sadly, many children don’t have that luxury. About 30% of children experience a chronic illness of some type. At least 18% are diagnosed with a serious chronic illness and fully 7% of American kids are significantly limited by a severe chronic illness. This amounts to over 6 million children. These kids most often suffer in silence and out of our awareness.

Children with chronic illnesses are different. Adults with chronic illness face a few common conditions. Notable examples are osteoarthritis, diabetes, hypertension and coronary artery disease. Most primary care providers handle this well. Children, on the other hand, encounter a wide variety of uncommon illnesses. Muscular dystrophy, leukemia and spina bifida are but a few of the major ailments. This fact makes it much harder to access local care. Treatment usually involves a wide variety of providers who may or may not be local. Care is fragmented and spread among many specialists.

No one person sees the whole child. The very nature of our health care system involves fragmentation. Many sub-specialists are involved in the care of a child with serious chronic illness. The tendency is to refer each issue if severe enough to a different practitioner. Emotional, social, educational and family dynamic issues tend to be missed and minimized. The focus and direction of care comes from specialists with a narrow focus, high patient volume and considerable time pressure. The child suffers.

When children suffer the parents suffer. The stress encountered by the parents of a child with chronic illness is difficult to imagine. The pressures are as varied as the children and their illnesses. Financial difficulties arise from lost income due to missed work. The illness may magnify marital tensions that arise from the varied distractions and strains. Siblings may suffer as they lose time and attention from their parents. The complex issues that families face is well beyond the ability of our current health care system to recognize or address.

Treatment often entails pain or trauma. The child may only partial understand the context or rationale for this. These kids experience a world of confusion, pain and fear. It should come as no surprise that kids in these situations are at high risk for developing Post Traumatic Stress Disorder (P.T.S.D.), depressive disorders or other anxiety disorders.

Children with chronic medical conditions experience much higher than average rates of psychiatric or behavioral disorders. Most experts agree that 15-18% of physically healthy kids exhibit a significant psychiatric disorder. Children with chronic medical illness develop 2-3 times the rates of these disorders. Children with neurological illness have rates five time those seen in healthy kids.

Conversely, children with significant psychiatric issues such as Major Depression or Obsessive Compulsive Disorder are much more likely than healthy kids to experience significant conditions such as migraine headaches or recurrent abdominal pain. The line between mind and body is not clear or specific. The only clear line exists in our treatment system. There, the gap between medical and mental health perspectives looms large.

Children with chronic illness erase this line every day. They challenge our treatment system. The treatment system in turn challenges each child and their family with transportation needs, scheduling issues, emotional tension and a steady financial drain. The complex issues that families face are well beyond the ability of our current health care system. We need a new model to deliver more effective health care to our children with chronic illness. We have a new model for you to consider.