In 1997, the Maternal Child Health
Bureau adopted the title Children with Special Health Care Needs
(CSHCN) to identify children who have, or are at risk of having,
a chronic physical, developmental, behavioral, or emotional condition
that requires health and related services of a type or amount beyond
that required by children generally.1 Applying
this definition to data collected in the 1994 National Health Interview
on Disability, 18% of the pediatric population is identified
as having special needs. In three subsequent survey reports, the
National CSHCN Screener in 2001, the National Survey of CSHCN in
2003, and the 2001–2004 Medical Expenditures Panel Surveys,
the prevalence of CSHCN has ranged from 12.8% to 19.3%.2 Multiple
studies using data from these surveys have shown that CSHCN use
more resources, have greater unmet health care needs (both primary
and specialty care), higher costs, and inadequate insurance. Children
with the highest functional disability were 50% less likely
to have adequate insurance as are minority and poor families. In
addition, there has been an increase in health care costs borne
by families, particularly when privately insured.3-5
A small, but growing, subset of CSHCN can be described as “medically
complex and fragile” with chronic conditions requiring technology
assistance. In 1987, the former US Office of Technology Assistance
defined the medically fragile, technology-dependent child as “one
who needs both a medical device to compensate for the loss of a
vital body function and substantial ongoing nursing care to avert
death or further disability.”6 The continued
growth of medical knowledge and technology has led to an increase
in the number of technology-dependent children living longer and
living at home with technological assistance. This fact, coupled
with the lack of home nursing care and the increased expertise of parents
in providing health care, has made the dual requirement of technology
and nursing an inadequate definition of medical fragility. However,
no new standard definition of medical complexity and fragility has
been established.7,8 Common characteristics of medically
complex and fragile CSHCN include chronic conditions requiring multiple medical
and nonmedical services, the use of technological supports, and
the need for effective care coordination. The level of and time
involved in care coordination depend both on their medical complexity
and fragility and a variety of nonmedical factors that impact access
to needed services (Table 124-1). This chapter
presents an approach to care coordination and describes some of
the common technological supports required to sustain life and optimize
function in medically complex and fragile children with chronic conditions.
124-1. Factors Influencing the Need for Care Coordination |Favorite Table|Download (.pdf)
124-1. Factors Influencing the Need for Care Coordination
|Factors Influencing Care Coordination||Level of Care Coordination Intensity|
|Complexity||< 3 organ systems||3–5 organ systems||> 5 organ systems|
|< 5 specialists||5–7 specialists||> 7 specialists|
|Known diagnosis and disease trajectory||Unknown diagnosis and disease trajectory||Disputed diagnosis and disease trajectory...|
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