...although the diseases that
kill attract much of the public’s
attention, musculoskeletal or rheumatic
diseases are the major cause of morbidity
throughout the world, having a substantial
influence on health and quality of
life, and inflicting an enormous burden
on health systems...rheumatic diseases
include more than 150 different conditions
and syndromes with the common denominator
of pain and inflammation. -- World
Health Organization 2003
Rheumatology is the study of diseases
that are characterized by inflammation
of joints, muscles, and/or tendons. While
several rheumatic diseases affect children,
the most prevalent types are juvenile
rheumatoid arthritis (JRA) and systemic
lupus erythematosus (SLE). These diseases,
along with several less common ones, affect
approximately 285,000 children in the
United States. Each disease varies in
symptoms, severity, and trajectory, requiring
close medical supervision across several
disciplines (detailed descriptions of
these diseases are provided in Appendix
A). The care of a child with a rheumatic
disease ideally involves a pediatric rheumatologist
in both the diagnostic and treatment phases;
only these providers have been trained
as specialists in the medical care of
pediatric rheumatic diseases.
Given the complexity of treating childhood
rheumatic diseases, a significant burden
is placed on those professionals and families
caring for children affected by these
diseases. Rheumatic diseases as well
as the drugs used to treat them can lead
to a variety of problems across multiple
systems of the body. The charge of the
pediatric rheumatologist is to prevent
or minimize the consequences of the illness
and manage the treatments so as to maximize
function while minimizing side effects.
Children are often cared for by a team
of physicians and other health care professionals
in a collaborative model that might include
a pediatric rheumatologist, an internist
rheumatologist, a general pediatrician,
occupational and physical therapists,
a dietician, an ophthalmologist, a psychologist,
and/or a social worker. The pediatric
rheumatologist must coordinate the various
medical services received by these children,
educate the children and their families
about the illness, and encourage treatment
adherence. Long distances to care providers
increases family burden and decreases
access to a continuum of important ancillary
health services.
Patient care activities must take into
consideration the family system as well
as the developmental stage of the child.
As such, pediatric rheumatologists, who
have trained as pediatricians as well
as pediatric rheumatologists, are particularly
well-suited to provide this care. The
outcomes of these diseases have improved
with the new multidisciplinary approaches
to treatment, including the availability
of new medications, which emphasize the
benefit of facilitating access to experts
in pediatric rheumatic diseases.
Pediatric
Subspecialist Supply and Access to Care
Pediatric rheumatologists belong to a
larger class of physicians referred to
as pediatric subspecialists. Pediatric
subspecialists care for children with
complex, chronic medical conditions in
addition to those with acute problems
normally beyond the scope of primary care
practice. Pediatric subspecialists offer
not only the benefit of advanced training
in the diseases in which they specialize
but also the breadth of experience, knowledge,
and comfort that comes from treating large
numbers of children with relatively rare,
highly variable disorders. With the exception
of asthma and attention deficit/hyperactivity
disorder (ADHD), primary care providers
may have very limited experience with
individual chronic pediatric conditions,
such as JRA. Adult subspecialists have
limited experience in the care of children
as well as diseases unique to children.
In the case of pediatric rheumatology,
pediatric rheumatologists must care for
a wide range of rare diseases with serious
and, sometimes, life-threatening complications.
Few primary care providers or internist
rheumatologists have extensive training
in the care of children with rheumatic
diseases, limiting their ability to substitute
for pediatric rheumatology care. More
detailed information on the unique features
of the pediatric subspecialty workforce
is described in Appendix B.
A recent study of primary and subspecialty
care use among chronically ill Medicaid
children found that use of pediatric subspecialty
care was uncommon for all study conditions.1
Only 18 percent of children with juvenile
arthritis saw a pediatric subspecialist.
In this study, use of pediatric subspecialty
care was significantly greater among Medicaid
children living in urban areas than among
their rural peers.1
Disease-specific studies have found a
relationship between rural residence and
a lower probability of seeing a specialist
for asthma,2
internist-subspecialists involvement in
the care of pediatric cancer and rheumatic
diseases, 3-6
and delays in referral for congenital
heart disease.7
An analysis of the National Survey of
Children with Special Health Care Needs
likewise found that low levels of pediatric
subspecialist supply were associated with
an increased likelihood of having an unmet
need for specialty care. 8
Thus, the location and availability of
pediatric subspecialists have important
implications for the use of their services.
This is particularly worrisome for pediatric
rheumatology, which is characterized by
a small, geographically concentrated workforce.
Unique Challenges
of Assessing the Pediatric Rheumatology
Workforce
A unique feature of the many pediatric
subspecialties, especially pediatric rheumatology,
is that the majority of these physicians
practice in academic medical centers.
In most cases pediatric subspecialists
still function as the proverbial “three-legged
stool,” providing patient care, educating
young physicians, and performing research
to understand and treat pediatric conditions.
An inadequate supply of these providers
limits their availability for patient
care; however, it also negatively affects
medical education. A pediatric subspecialty
shortage may limit medical student and
resident exposure to diseases treated
by these providers and perpetuate discomfort
and an unwillingness to care for children
with complex medical conditions among
general pediatricians. This lack of exposure
may also perpetuate low levels of interest
in a select number of fields.9
A shortage of pediatric subspecialty
providers also increases demand for patient
care services experienced by each individual
provider, leaving them less time for research
activity and diminishing their ability
to make advances in the understanding,
diagnosis, treatment, and management of
diseases that shorten or negatively affect
the lives of children.
It is neither possible nor practical
to assess the supply of pediatric subspecialists
only in terms of their availability to
provide patient care: one must consider
the affects of their other professional
roles, not only on the supply of these
providers, but also the demand for them.
10
Academic medical centers are the primary
employers of these physicians. Their
perceived need for providers as well as
their ability to generate sufficient revenue
to employ these providers have important
implications for the availability of pediatric
subspecialty care. Moreover, the expectations
of the academic medical center with regard
to the professional activities of individual
physicians (i.e., the distribution of
time in patient care, research, and educational
activities) will heavily influence the
availability of patient care. In this
report, we consider the diverse professional
roles of pediatric rheumatologists and
discuss the implications of the roles
for the adequacy of supply.
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