Chapter 6.  Potential Solutions

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:

1. 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.
2. Assess wait times for initial patient appointments at centers with pediatric rheumatologists to determine if additional providers are needed at these institutions.
3. 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.
4. 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:

1. Expand requirements of internist rheumatology training to include adolescents.
2. Develop on-line or CD-ROM-based training programs and make it available to internist rheumatologists, general pediatricians, pediatric residents, and medical students.
3. Develop pediatric guidelines for the most common juvenile rheumatic diseases and disseminate the guidelines, especially to internist rheumatologists.
4. 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.
5. 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:

1. Assess the availability of reimbursement for care delivered to children with rheumatic diseases via telemedicine.
2. Survey pediatric rheumatologists to assess their access to telecommunications and their willingness to provide patient care and training using these media. 
3. Survey training programs about their interest in using these media as part of physician training.
4. 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.
5. 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:

1. Survey pediatric rheumatology programs to assess their current involvement in shared management with other providers.
2. 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:

1. 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.
2. 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.