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MANDATED BY: PUBLIC LAW 106-310 CHILDREN'S
HEALTH ACT OF 2000 (HR4365)AUTHORIZED
AS SECTION 763 (b), PART E, TITLE VII
OF THE PUBLIC HEALTH SERVICE ACT
February 2007
Elizabeth M. Duke
Administrator, HRSA
Report to Congress
Executive
Summary
Legislative
Charge
The Public Health Service Act in Section
763, Pediatric Rheumatology states, “The
Secretary, acting through the appropriate
agencies, shall evaluate whether the number
of pediatric rheumatologists is sufficient
to address the health care needs of children
with arthritis and related conditions,
and, if the Secretary determines that
the number is not sufficient shall develop
strategies to address the shortfall.”
(Public Law 106-310 authorized in the
Public Health Service Act, Title VII,
Part E, Subpart 1, Section 763). This
report was prepared to fulfill that mandate
by:
- Reviewing the existing literature
on children’s access to pediatric rheumatology
care in the United States in regard
to pediatric rheumatologist supply and
the role of other physician providers
in treating these children;
- Analyzing available data to assess
the supply of and demand for pediatric
rheumatologists in the United States;
and
- Determining if a shortage of pediatric
rheumatologists exists and, if so, discussing
those factors that would affect the
shortage and describing possible options
for ameliorating local and nationwide
shortages.
The contract for this study, University
of North Carolina at Chapel Hill (Dr.
Michelle Mayer, Ph.D.), was awarded by
the U.S. Department of Health and Human
Services, Health Resources Services Administration
(HRSA). HRSA staff was responsible for
overseeing this study. In addition, staff
of the American Board of Pediatrics, American
Academy of Pediatrics, Arthritis Foundation,
and the Pediatric Section of the American
College of Rheumatology provided invaluable
professional insight.
Pediatric
Rheumatologist Specialty
Pediatric rheumatologists care for children
and adolescents with diseases characterized
by inflammation of joints, muscles, and/or
tendons. The most prevalent pediatric
rheumatic diseases are juvenile rheumatoid
arthritis (JRA) and systemic lupus erythematosus
(SLE). These diseases, along with several
other less common ones, affect approximately
285,000 children in the United States.
Only pediatric rheumatologists have been
trained as specialists to treat the complex,
severe, and sometimes life-threatening
rheumatic diseases of childhood. Given
the potential for severe illness and disability
associated with pediatric rheumatic diseases
and the potential for a markedly improved
outcome with optimal treatment, an adequate
supply of pediatric rheumatologists is
essential to provide children suffering
from these diseases with access to expert
care.
Key Findings
- The evidence indicates that there
is a shortage of pediatric rheumatologists
in the United States.
- Pediatric rheumatology is characterized
by a small number of providers concentrated
in a limited number of areas in the
United States; 13 States lack a pediatric
rheumatologist, and throughout the Country
provider to population ratios exceed
practice capacity.
- Pediatric rheumatologists who were
surveyed unanimously perceive a national
shortage. Additionally, there is evidence
of substantial reliance on internist
rheumatologists (i.e., those that specialize
in the care of adults with rheumatic
diseases) to compensate for the lack
of sufficient pediatric rheumatologists.
Contributing to the shortage, the majority
of pediatric rheumatologists practice
in academic medical settings where they
function as patient care providers, medical
educators, and researchers. These diverse
roles compete for pediatric rheumatologists’
limited time and decrease the availability
of patient care they are able to provide.
Efforts to increase the availability of
clinical time for current pediatric rheumatologists
and attempts to increase their numbers
are warranted at this time.
Data Sources
This report synthesizes the results of
previously published studies identified
by a systematic review of the pediatric
subspecialty workforce literature. In
addition to these published studies, analyses
were conducted using data from a variety
of sources. Slightly more recent data
may be available by the time of publication,
but the data presented in this report
were the most up-to-date at the time of
analysis. More detailed information about
data analyzed for this report can be found
in the appendices listed below:
- Appendix C describes 2003 data from
the American Board of Pediatrics (ABP),
which certifies pediatric rheumatologists
and other pediatric subspecialists.
Appendix C also contains 2001 and 2004
membership data from the American College
of Rheumatology (ACR), the professional
association of rheumatologists.
- Appendix D details data from the
United States Bureau of the Census,
the HRSA Bureau of Health Professions
Area Resource File and the ABP that
were combined to estimate distances
to care.
- Appendix E provides detailed information
on a 2004 survey of practicing pediatric
and internist rheumatologists, performed
by the Arthritis Foundation and the
American College of Rheumatology.
- Appendix F describes the methodology
for a 2004 survey of pediatric residency
directors on the role of pediatric rheumatologists
in the education of general pediatrics
residents and how the current supply
of these providers affects graduate
medical education.
Additional information from the North
Carolina Medicaid Program, American Academy
of Pediatrics, the American College of
Rheumatology, and the American Board of
Pediatrics was used.
Chapter Summaries
(Significant Findings Listed)
Chapter
1. Background on Pediatric Rheumatology
and Pediatric Rheumatic Diseases
highlights the unique characteristics
of pediatric rheumatology workforce in
the United States and provides a brief
introduction to childhood rheumatic diseases.
- Only pediatric rheumatologists have
been trained as specialists to treat
the complex, severe, and sometimes life-threatening
rheumatic diseases of childhood.
- Pediatric rheumatic diseases affect
nearly 300,000 children in the United
States.
- The most common juvenile rheumatic
disease, juvenile rheumatoid arthritis,
is unique to children and can affect
children as young as infants.
- As a group these conditions are among
the most common chronic illnesses of
childhood and involve considerable disease
burden and disability.
- Pediatric rheumatic diseases require
frequent and ongoing medical care:
physician visits, laboratory work, infusion
therapy, and physical and occupational
therapy. Long travel distances between
patient and caregiver can impede continuity
of care and access to important ancillary
healthcare services.
Chapter
2. The Pediatric Rheumatology Workforce:
Current Supply describes
the current status of the pediatric rheumatology
workforce in the United States, including
the number and distribution of pediatric
rheumatologists, training requirements,
and perceptions of supply.
- Fewer than 200 certified pediatric
rheumatologists currently practice in
the United States, making it one of
the smallest pediatric subspecialties.
- Thirteen States, including heavily
populated States such as Arizona, South
Carolina, and Alabama, lack a pediatric
rheumatology provider within their borders.
- On average, children in the United
States travel 57 miles to reach the
nearest pediatric rheumatologist. In
contrast, children need to travel less
than 25 miles to reach pediatric specialists
in cardiology, endocrinology, and many
other fields.
- Pediatric rheumatologists unanimously
perceive that there is a national shortage
of pediatric rheumatology providers;
two-thirds also perceive a local shortage
in their practice area.
- Pediatric rheumatologists attribute
the current shortage to low salaries,
inadequate reimbursement, and poor working
conditions. At the assistant professor
level, pediatric rheumatologists’ annual
salaries average $115,022. In contrast,
average salaries for pediatric cardiology,
neonatal medicine, and pediatric critical
care medicine at this academic rank
are more than $144,000.
- The limited supply of pediatric rheumatologists
often results in long wait times for
appointments, delayed diagnosis or treatment,
and possibly leads to misdiagnosis and
inappropriate treatment.
- One third of institutions housing
pediatric residency programs would like
to hire a pediatric rheumatologist but
are unable to do so for financial or
other reasons.
- The majority of pediatric rheumatologists
work in a small number of academic medical
centers where they are also responsible
for performing basic and/or clinical
research and educating medical students,
residents, and fellows. Thus, other
professional activities limit the time
they have available to provide patient
care.
- As many as one-third of pediatric
rheumatology patients are insured through
Medicaid, which reimburses physicians
at levels below those of private insurers
and Medicare. Low reimbursement rates
limit clinical revenue for pediatric
rheumatology practices and threaten
their financial viability.
Chapter
3. Estimating Pediatric Rheumatology
Workforce Requirements
uses prevalence estimates, pediatric population
data, and pediatric rheumatologist supply
to estimate the demand for pediatric rheumatologists
in the United States and presents data
on available positions.
- In some States, demand models estimate
that there are over 3,000 children with
rheumatic diseases per pediatric rheumatologist,
a number that far exceeds the average
practice capacity of 443 children.
- Using State level population data,
models developed for this report estimate
that at least 337 pediatric rheumatologists
are needed to meet patient care needs.
Given the current number of pediatric
rheumatologists, there needs to be a
75 percent increase in the number of
pediatric rheumatologists.
- The majority of recently trained
pediatric rheumatologists practice in
a county that has another pediatric
rheumatologist in practice. If maldistribution
of supply continues, increases in supply
may not ameliorate regional, statewide,
or local shortages unless there are
incentives to locate in areas that currently
lack providers.
- While there were 23 advertised pediatric
rheumatology positions in September
2004, only 10 pediatric rheumatology
fellows completed training in the 2003-2004
academic year, suggesting that current
training levels are not sufficient to
fill vacant positions.
Chapter
4. Substitutes for Pediatric Rheumatologists?
Primary Care Providers and Internist Rheumatologists
Involvement in Pediatric Rheumatology
Care as Evidence of a Shortage
discusses the involvement of primary care
providers and internist rheumatologists
in caring for children with rheumatic
diseases.
- Substitutes for pediatric rheumatologists
are limited.
- Internist rheumatologists play a
prominent role in the care of children
with rheumatic diseases due, in part,
to the limited availability of pediatric
rheumatology care. Many internist rheumatologists
limit their involvement to the care
of adolescents and feel less comfortable
than do their pediatric rheumatologist
peers managing the care of children.
- By virtue of their training in the
care of adults, internist rheumatologists
may have limited experience with the
rheumatic diseases common to childhood
and lack an understanding of the unique
clinical and psychological needs of
pediatric patients.
- Primary care providers, like family
practitioners and general pediatricians,
play a limited role in the care of children
with rheumatic diseases. Only one percent
of primary care providers diagnose and
treat juvenile rheumatoid arthritis
independently and these providers generally
feel uncomfortable caring for these
children and refer them to pediatric
or internist rheumatologists.
- There have not been investigations
of differences in the quality of pediatric
rheumatology care across physician types
(i.e., pediatric rheumatologists, internist
rheumatologists, or primary care providers).
Chapter
5: Important Issues Facing the Pediatric
Rheumatology Workforce
details the non-clinical roles of pediatric
rheumatology providers and highlights
their relevance to the shortage.
- One-third of medical schools and
40 percent of pediatric residency programs
have no pediatric rheumatologist available
to provide patient care or educate physicians
in training.
- Many medical students and general
pediatrics residents receive little
training in the diagnosis and management
of children with rheumatic disease,
which may lead to unwillingness to care
for these children and perpetuate low
levels of interest in this field.
- While specific effects of the current
shortage of pediatric rheumatologists
on research activities are unknown,
the pressures of meeting patient demand
in the face of a provider shortage leaves
limited time for research activities
and may impede the advancement of medical
science in this field and delay the
development of treatments.
Chapter
6. Potential Solutions
discusses the relative merits of various
solutions to the access problems facing
pediatric rheumatology. There are several
approaches to increasing access to pediatric
rheumatology care.
- The number of pediatric rheumatology
fellows has increased in recent years;
however, existing programs fail to fill
all their available fellowship positions.
Financing fellowship positions continues
to be a challenge. Enhanced availability
and financing of fellowship training
will increase the number of trainees
in the field.
- Efforts to increase the number of
trainees should include incentives to
practice in relatively underserved areas
after completion of training.
- Increases in the number of trainees
as well as increases in the number of
pediatric rheumatologists locating in
underserved areas will require reallocation
of resources. Some potential areas
for financial support include using
existing programs, such as loan repayment
programs, to target pediatric rheumatology.
- Improve the financial viability of
pediatric rheumatology practice in academic
settings.
- Enhance the ability of internist
rheumatologists and primary care providers
to provide care to children with rheumatic
diseases through education and training.
- Advocate for changes in the requirements
for internist rheumatology fellowship
training to include the care of
adolescents (i.e., similar to requirements
for endocrinology, diabetes, and
metabolism fellowship).
- Develop practice guidelines for
juvenile rheumatoid arthritis to
encourage internist rheumatologists
to provide more care to children
with juvenile rheumatoid arthritis.
- Facilitate general pediatricians’
exposure to pediatric rheumatology
during residency through programs
to encourage pediatric rheumatologist
placement at centers that lack these
providers and/or through telecommunications,
like telemedicine and on-line training
programs.
- Augment programs like Pediatric
Rheumatology Visiting Professorship
Programs to increase exposure to
pediatric rheumatology in medical
schools and pediatric residencies.
- Survey pediatric rheumatologists
to determine their access to telecommunications
and their willingness to provide
training using these media. Survey
training programs about their interest
in using these media as part of
physician training.
- Pilot telecommunications-based
educational programs that link pediatric
rheumatology centers and residency
programs without pediatric rheumatologists
and evaluate their effectiveness
at improving knowledge, skills,
and comfort levels.
- Pilot telecommunications-based
patient care networks that link
pediatric rheumatologists with distant
providers and evaluate patient and
providers outcomes.
- Use nurses, advanced-practice nurses,
and physician assistants to extend pediatric
rheumatologists. Delegation of certain
tasks, such as referral coordination
or telephone triage, to these providers
allows pediatric rheumatologists more
time to concentrate on patient care
and other professional activities.
Chapter
7. Conclusions are that
a pediatric rheumatology shortage exists
and a 75 percent increase is needed. |
