Multiple studies have demonstrated that
the number and distribution of pediatric
rheumatologists in the United States is
not sufficient to provide patient care
to all children with rheumatic diseases.
At a minimum, the number of pediatric
rheumatologists needs to increase from
the current number of 192-200 to a minimum
of 331-337 to achieve comparable provider
to patient ratios across States. Furthermore,
the availability of pediatric rheumatologists
is not sufficient to ensure their involvement
in the training of general pediatricians
and internist rheumatologists. Additional
providers may be needed to ensure the
availability of pediatric rheumatologists
at medical schools and pediatric residency
programs. The effects of the current
shortage of pediatric rheumatologists
on the progress of research are unknown.
The supply of pediatric rheumatologists
ideally should be sufficient to allow
these providers to participate in basic
and clinical research and allow a certain
percentage of them to devote the majority
of their professional time to advancing
the understanding and management of these
diseases.
Whenever there are concerns about the
availability of physician services, several
potential solutions are typically debated.
This report discusses several options,
including increasing the supply of pediatric
rheumatologists, increasing the role of
internist rheumatologists and general
pediatricians in the care of children
with rheumatic diseases, using telemedicine
to facilitate patient care and continuing
education, developing shared management
programs, and using nurses or physician
assistants to extend pediatric rheumatologists.
Increase Supply
of Pediatric Rheumatologists
One possible solution to the current
supply of pediatric rheumatologists is
to increase their numbers. There are
approximately 200 pediatric rheumatologists
presently in the United States and 49
fellows in training. A small number of
these trainees may fail to complete training
or may leave the United States; nevertheless,
an influx of new rheumatologists over
the next several years can be expected.
Retirement rates in the field have not
been studied; however, the ABP reports
that eight pediatric rheumatologists are
currently over the age of 60 and data
from the AF/ACR survey suggest that one
to two pediatric rheumatologists retire
annually. It is unclear how many providers
will be lost to career changes over time;
assuming a low retirement rate, at current
training levels it will take 12-15 years
to reach the AAP goal of 400.
While models described in this report
project the need for an increase to at
least 331-337 pediatric rheumatologists,
the models use a fairly large patient
to provider ratio that may not be realistic.
More detailed data on actual patient volumes
may help refine these estimates and allow
a more accurate estimate of the number
of pediatric rheumatologists needed nationwide.
Increases in the supply of pediatric
rheumatologists would be most helpful
to the extent that new pediatric rheumatologists
locate in medical schools and geographic
areas that currently lack pediatric rheumatologists
and have sufficient patient demand to
support their services. ABP data have
shown that over 80 percent of pediatric
rheumatologists who completed training
since 1987 practice within a county that
also has at least one pediatric rheumatologist
who graduated from medical school prior
to 1987; consequently, only one in five
recently trained pediatric rheumatologists
either works in a market that has no other
provider or replaced a retiring provider.
There are several States, for instance
Arizona, South Carolina, and Alabama,
that currently lack pediatric rheumatologists
and have pediatric populations that are
sufficiently large to support the patient
care activities of one or more pediatric
rheumatologists. Programs that encourage
entry of pediatric rheumatologists seem
warranted for those geographic areas that
lack these providers despite having an
adequate population base.
Areas with large numbers of pediatric
rheumatologists, like Cincinnati or Chicago,
tend to have one or more academic medical
centers; however, many pediatric rheumatologists
at these centers may be primarily research
physicians and provide limited patient
care. As such, supply may be inadequate
even in areas with a relatively large
number of providers. To assess the need
for additional providers in these areas,
studies of actual clinical full-time equivalents
and wait times for an initial patient
appointment may be helpful.
Because salary concerns and reimbursement
issues figured prominently in pediatric
rheumatologists’ assessment of factors
contributing to the nationwide shortage
of these providers, efforts to increase
interest in this field may require improvements
in the financial remuneration of pediatric
rheumatology practice through increases
in provider reimbursement. Increases
in reimbursement will also enhance the
financial viability of pediatric rheumatology
practices within academic medical centers
and may provide the necessary funds for
the centers to support pediatric rheumatologists.
In addition to concerns about patient
care, the supply of pediatric rheumatologists
has important implications for the training
of general pediatricians. Many pediatric
residents and medical students have limited
exposure to pediatric rheumatology, which
may relate to general pediatricians reluctance
to pursue additional training in this
field or be involved as primary care physicians
in the care of children with JRA. 30
Programs and/or interventions that facilitate
the placement of pediatric rheumatologists
in residency programs may not only increase
the availability of pediatric rheumatology
care but also enhance the education of
general pediatricians about rheumatic
diseases and encourage their involvement
in the care of children with rheumatic
diseases.
The implications of the current
supply of pediatric rheumatologists on
the advancement of basic and clinical
research are not known and need to be
established. A lack of investigators
may delay the development of novel remedies
for the largely incurable rheumatic illnesses
affecting children. Studies of the relationship
between patient to provider ratios and
successful funding and publication may
be enlightening.
Possible Options:
- Increase the supply of pediatric rheumatologists
in those areas that currently lack providers
despite sufficiently large pediatric
populations, have high patient to provider
ratios, and lack pediatric rheumatologists’
involvement in the training of general
pediatricians.
- Allocate additional resources
to fellowship programs to support
training.
- Include pediatric rheumatology
as a specific focus area for the
loan repayment programs.
- Target funding for salary or research
support to institutions that lack
pediatric rheumatologists or have
an inadequate number of providers.
- Assess wait times for initial patient
appointments at centers with pediatric
rheumatologists to determine if additional
providers are needed at these institutions.
- Review reimbursement policies to improve
the financial viability of pediatric
rheumatology practices, facilitating
hiring of pediatric rheumatologists
in centers that lack them due to financial
constraints, improving retention and
making the field more attractive to
current trainees.
- Assess the tension between provision
of patient care and the research and
educational demands of academic practice.
Increase Reliance
on Internist Rheumatologists and/or General
Pediatricians
Another potential interim solution is
to increase the involvement of internist
rheumatologists and/or general pediatricians
in the care of children with rheumatic
diseases. The prominent role of internist
rheumatologists in the care of children
with rheumatic diseases is well established.
4,
6, 21,
22
The American College of Rheumatology
Guidelines on the Referral of Children
with Rheumatic Diseases acknowledges the
capacity constraints facing the pediatric
rheumatology workforce and recognizes
the value of internist rheumatologists
as care providers. 52
Efforts to enhance the involvement of
internist rheumatologists in the care
of children with rheumatic diseases must
ensure their comfort in treating these
children, facilitate the provision of
quality care, and provide access to pediatric
rheumatology expertise. The development
and dissemination of practice guidelines
may be particularly useful as internist
rheumatologists involved in the care of
children have expressed interest in the
availability of practice guidelines for
the treatment of children with JRA. 30
The role for general pediatricians and/or
physician extenders in increasing access
to care for children with rheumatic diseases
appears to be rather limited at present.
One single-center study showed that children
with swollen joints are frequently referred
to orthopedic surgeons before being referred
to pediatric rheumatologists; a more recent
national survey found, however, that general
pediatricians and family practitioners
refer the majority of JRA patients to
pediatric and internist rheumatologists.
53
The overwhelming majority of pediatricians
and family practitioners lack confidence
in their ability to diagnosis and manage
JRA and few describe themselves as being
current in the treatment of JRA. 30
Primary care providers at most may be
willing to co-manage the care of children
with JRA; their willingness to be involved
in the care of the rarer rheumatic diseases
is not known.
The involvement of internist rheumatologists
and/or general pediatricians in the care
of children with rheumatic disease can
be encouraged through a variety of approaches:
changes in graduate medical and continuing
education, use of telemedicine for patient
care and educational purposes, and establishment
of shared management networks.
Graduate Medical
and Continuing Education
Exposure to pediatric rheumatology during
training may enhance internist rheumatologists’
willingness to see children. A previous
study found that over 60 percent of Washington
State internist rheumatologists who treated
children reported having moderate to extensive
pediatric rheumatology experience during
their fellowship, but only 20 percent
who did not treat children characterized
their level of exposure to pediatric rheumatology
during their fellowship as moderate or
extensive. 4
Over 50 percent of California internist
rheumatologists involved in the care of
children reported having no or minimal
exposure to pediatric rheumatology during
their fellowship training. Currently,
internist rheumatology fellowship training
guidelines recommend, but do not require,
the inclusion of training in pediatric
rheumatology; 54
consequently, many internist rheumatologists
may lack sufficient exposure to clinical
pediatric rheumatology during their training
to encourage pediatric rheumatic disease
care in their practices.
A viable approach to enhancing the involvement
of internist rheumatologists in the care
of children with rheumatic diseases may
be to expand their training to include
adolescents, as fellowship training requires
in endocrinology, diabetes and metabolism.
55
At least one study suggests that the role
of internist rheumatologists in the care
of children with rheumatic diseases is
fairly limited to adolescents; 22
augmenting their exposure to these patients
during fellowship may increase their willingness
and ability to care for this subpopulation.
Greater availability of elective pediatric
rheumatology rotations during adult rheumatology
fellowships may further enhance internist
rheumatologists’ willingness to care for
younger children with rheumatic diseases.
Few general pediatrics residents currently
do a formal pediatric rheumatology rotation
during residency; the relationship between
this lack of exposure and their lack of
involvement in the care of rheumatic diseases
remains unclear. Freed and colleagues
30
found that only 42 percent of surveyed
pediatricians felt comfortable treating
JRA and only 18 percent described themselves
as adequately trained to diagnose/manage
JRA. Greater exposure to pediatric rheumatology
care during residency may enhance general
pediatricians’ willingness to be involved
in the care of these children and increase
interest in the field.
There are several efforts to increase
access to pediatric rheumatology care
and pediatric rheumatology training.
Visiting professor programs increase the
availability of training in pediatric
rheumatology to pediatric residency programs
lacking pediatric rheumatologists on staff.
CARRA includes internist rheumatologists
involved in the care of children and establishes
linkages between these providers and pediatric
rheumatologists, which expands access
to pediatric rheumatology expertise as
well as clinical trials to a wider group
of patients.
Annual meetings of the ACR and the American
Academy of Pediatrics (AAP) have been,
and continue to be, sources of continuing
education for non-pediatric rheumatologists
interested in the care of children with
rheumatic diseases. The Rheumatology
Section of the AAP sponsors sessions related
to the care of these children at the annual
meeting of the AAP; similarly, sessions
of pediatric rheumatology for internist
rheumatologists are offered annually at
ACR. The success of these programs in
encouraging the involvement of general
pediatricians and internist rheumatologists
in the care of children with these diseases
has not been established.
Finally, Freed and colleagues demonstrated
through surveys and focus groups that
internist rheumatologists had an interest
in practice guidelines for the treatment
of JRA. Development and widespread dissemination
of these guidelines to these providers
will assist them in providing state-of-the-art
care to children with this disease. Pediatric
guidelines for the treatment of other
rheumatic diseases, like lupus, may also
help internist rheumatologists tailor
care to the unique needs of children and
adolescents.
Possible Options:
- Expand requirements of internist
rheumatology training to include adolescents.
- Develop on-line or CD-ROM-based training
programs and make it available to internist
rheumatologists, general pediatricians,
pediatric residents, and medical students.
- Develop pediatric guidelines for the
most common juvenile rheumatic diseases
and disseminate the guidelines, especially
to internist rheumatologists.
- Facilitate general pediatricians’
exposure to pediatric rheumatology during
residency through programs like the
Amgen Pediatric Rheumatology Visiting
Professorship or telemedicine, or encourage
pediatric rheumatologist placement at
centers that lack these providers through
targeted young investigator awards or
other programs.
- Monitor attendance and evaluate effectiveness
of continuing education sessions offered
at annual meetings.
Telemedicine and
Other Technologies
Telecommunications, for instance telemedicine
and Internet-based seminars, may be useful
in ameliorating the poor distribution
of pediatric rheumatologists by providing
an educational medium in addition to facilitating
consultation with distant pediatric rheumatologists.
Using telemedicine, internist rheumatologists
can consult with distant pediatric rheumatologists
on pediatric cases in which they are involved.
Patients benefit from the unique training
and expertise of pediatric rheumatologists
through these consultations and, consequently,
receive more effective care. Such interactions
also serve as an ongoing teaching opportunity
for participating internist rheumatologists.
The use of telecommunications during
the medical training of internist rheumatologists,
primary care physicians, and general pediatricians
may facilitate exposure to pediatric rheumatology.
Students could participate in lectures
online and have pediatric rheumatologists
on “virtual” call during rounds for consultation,
providing access to pediatric rheumatologists
nationwide. Exposure to pediatric rheumatology
during training ultimately may increase
the comfort of these physicians in diagnosing
and even co-managing care for patients
living in areas without pediatric rheumatologists.
Similar technologies can be used to supply
continuing education to providers.
Studies show the beneficial use of telemedicine
to increase access to Continuing Medical
Education (CME), especially for rural
physicians. In a 21-month study, 927
physicians in rural Vermont and upstate
New York were able to attend grand rounds
at Fletcher Alan Health Care in Burlington;
almost three-quarters of the participants
reported that it was “as effective as
having the presenter in the room.” 56
A similar study was conducted in Nova
Scotia, Canada where participants reported
that one of the most beneficial aspects
was the ability to interact with and engage
in discussions with other distant participants.
57
Telemedicine also may be used to increase
access to patient care for children with
rheumatic diseases. For children under
12 with rheumatic diseases, especially
those living distant from academic medical
centers, care may be especially difficult
to obtain. It is not clear that training
requirements can be changed to include
this patient population for all internal
medicine rheumatology programs, especially
those without access to pediatric rheumatologists.
Among the internist rheumatologists involved
in the care of children in the California
survey, more than three-quarters indicated
interest in obtaining advice from a pediatric
rheumatologist via telemedicine or videoconferencing.
22
Slightly more than one-quarter of internist
rheumatologists not treating pediatric
patients indicated that the ability to
obtain advice from a pediatric rheumatologist
via telecommunications would influence
their willingness to treat pediatric patients.
Past studies of telemedicine have demonstrated
high levels of patient and family satisfaction
with their telemedicine experiences. 58-60
61
Karp and colleagues found that patient
satisfaction with telemedicine was enhanced
by the presence of a nurse case manager,
the inclusion of a patient orientation
before the consultation, and the quality
of the equipment. In several studies
patients indicated that telemedicine saved
them time and travel costs. 59,
60
Another study found that parents of children
with special health care needs (CSHCN)
living in rural areas often preferred
telemedicine over waiting several days
to visit a specialist outside their local
area. 62
Studies of provider satisfaction have
been less consistent than those of patient
satisfaction. Some suggest that remote
clinicians have less confidence in their
diagnostic accuracy than face-to-face
providers; 63
64
other studies suggest that provider satisfaction
and comfort with telemedicine increases
with exposure to telemedicine services.
58,
59
Some unanswered questions surrounding
the widespread use of telemedicine for
patient care include by whom and how payment
will be provided. Because Medicaid programs
are not required to inform the Centers
for Medicare and Medicaid Services (CMS)
about their practices regarding telemedicine
reimbursement, existing data on Medicaid
reimbursement for telemedicine are out-of-date.
According to 2001 data from the CMS Web
site, approximately 18 States reimburse
physicians for telemedicine services;
these States generally paid providers
at the originating site as well as the
distant site. 65
Under the Benefits Improvement and Protection
Act of 2000, Medicare also expanded coverage
for telehealth services; however, Medicaid
rules require that the originating site
be within a designated rural health professional
shortage area, a non-metropolitan statistical
area, or a Federal telehealth demonstration
project. Little is known about coverage
for telemedicine among private insurers.
Other obstacles to widespread use of
telemedicine include the availability
of remote specialists to be on-call for
teleconsultations, the availability of
sufficient technology in rural communities
to support a telemedicine program, maintenance
of confidentiality, adaptation of State
licensure laws when the distant provider
is out-of-State, and financing of the
initial capital investment.
Possible Options:
- Assess the availability of reimbursement
for care delivered to children with
rheumatic diseases via telemedicine.
- Survey pediatric rheumatologists to
assess their access to telecommunications
and their willingness to provide patient
care and 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 a telecommunications-based patient
care network that links pediatric rheumatologists
with distant providers and evaluate
patient and providers outcomes.
The Shared-Management
Approach
A shared management model allows community-based
physicians, along with university-based
specialists, to co-manage the care of
patients with special needs. Under such
a system the community-based physician
refers the patient to a university-based
specialist who diagnoses the condition
and prescribes a treatment regimen. The
patient then returns to the referring
physician where treatment is co-managed
with the specialist, sometimes using telemedicine.
One study found that more than 75 percent
of chemotherapy could be provided by community-based
physicians participating in such a system
with the University of Iowa Pediatric
Cancer Center. 66
Survival rates were comparable between
those children who received care through
the shared management approach and those
who received care only from a pediatric
oncologist.
The potential benefits of using this
approach for pediatric rheumatology patients
are many, including increased access for
those living in rural areas without a
pediatric rheumatologist, economic savings
in per-visit costs and travel expenses,
and a sense of relief from the anxiety
associated with being so far from a physician
who is knowledgeable about your individual
care needs. Participating primary care
physicians also appreciate these arrangements
for their educational value, the improved
relationships with specialists, and the
relief of having another physician with
whom to share the stress of patient care.
It is also beneficial to the university-based
specialist as it increases their referral
base. 66
Possible Options:
- Survey pediatric rheumatology programs
to assess their current involvement
in shared management with other providers.
- Pilot a shared management program,
similar to the University of Iowa Pediatric
Oncology Program, for children with
rheumatic diseases and evaluate patient
and provider outcomes.
Increased
Reliance on Nurses to Manage Telephone
Inquiries
In some physician clinics, creating
a “Telephone Nursing Line” can dramatically
decrease the time physicians spend giving
telephone advice and increase their available
time for office visits. 67
With adequate training nurses can become
qualified to address calls about medications,
test results, and symptom management,
in addition to medical administrative
issues. A study conducted in a pediatric
neurology outpatient clinic found that
nurses were able to respond to 52.9 percent
of all incoming calls and to successfully
triage the remaining calls to the appropriate
physician. 67
While there are some liability concerns
surrounding the potential for incorrect
diagnoses and breach of confidentiality,
it is believed that, with sufficient training,
these risks can be minimized. Given the
multitude of competing demands on the
time of pediatric rheumatologists, increased
reliance on nurses appears to be a potential
solution to the problem of insufficient
time to address medical questions over
the telephone – an important component
of the continuity of care for families
of rheumatic children.
Possible Options:
- Assess the role of nurses, advance-practice
nurses, and physician assistants in
extending pediatric rheumatologists
by performing selected duties, such
as case management and telephone triage.
- Assess the feasibility of training
advanced-practice nurses and physician
assistants to provide pediatric rheumatology
care in an underserved area, through
a care network established with a distant
pediatric rheumatologist.
|