Chapter 5.  Important Issues Facing the Pediatric Rheumatology Workforce

There are three major issues that present significant challenges to both the short and long-term ability of the pediatric rheumatology workforce to meet the demand for patient care.  They are: (1) lack of faculty and training availability; (2) insufficient clinical care cost recovery; and (3) research requirements limiting patient care access.

Issue 1:  Lack of Faculty and Training Availability

There are currently 80 medical schools in the United States with a pediatric rheumatologist on faculty, leaving over one-third of the Nation’s 125 medical schools without physicians in this subspecialty.¹⁹ A shortage of these providers not only limits the ability of these institutions to care for children with rheumatic diseases, but it leaves many medical schools and pediatric residency programs unable to adequately expose trainees to the pediatric rheumatology field. Limited exposure to pediatric rheumatology during medical training intensifies the effects of the pediatric rheumatology shortage in two important ways:

1. Leaving general pediatricians and family physicians ill-prepared to be involved in the initial diagnosis and management of children with suspected or known rheumatic diseases, thereby increasing demand for pediatric rheumatologists, and
2. Decreasing the pool of students interested in pursuing a career in this field.

As discussed in Chapter IV, past studies have shown that having training in the care of children with rheumatic diseases may enhance providers’ willingness to care for children with rheumatic disease.  One previous study found a relationship between adequacy of training and referral patterns for JRA among primary care providers; consequently, pediatric rheumatology training is particularly relevant to prepare primary care physicians and pediatricians to identify children with rheumatic diseases and participate in their care.

Exposure to pediatric rheumatology is also important during training because of its effects on career choice.  Studies also found an association between exposure to a subspecialty during training and intentions to pursue it as a career.^{9, 32, 33} Since pediatric rheumatologists must first complete medical school and pediatric residency training before entering a pediatric rheumatology fellowship, exposure to pediatric rheumatology at earlier stages of physician training may generate their interest in the field.

Availability of Pediatric Rheumatology Training in General Pediatrics Programs

In the spring of 2004, all 195 pediatric residency directors in the United States and Puerto Rico were surveyed to assess the status of pediatric rheumatology training in general pediatric residency programs.  The survey questioned (1) the availability of pediatric rheumatology training in general pediatrics residency, (2) the relationship between the characteristics of pediatric rheumatology training in general pediatrics residency and the presence of pediatric rheumatologists at the training institution, and (3) the adequacy of pediatric rheumatology supply locally and statewide.  Details about the survey are provided in Appendix F.

Of the 195 programs surveyed, 127 (65 percent) responded.  Descriptive statistics are presented in Table 17.  Respondents were asked to indicate the number of pediatric rheumatologists with patient care responsibilities at their institution.  Seventy of the responding programs (56.7 percent) had one or more pediatric rheumatologists on staff, including two institutions that reported sharing a provider with another institution.  The number of pediatric rheumatologists in these programs ranged from one to six, with a mean of 1.8.  Programs with pediatric rheumatologists on staff were significantly larger, in terms of pediatric residents, than those without these providers and had significantly fewer residents pursuing general pediatrics careers.  Thus, pediatric rheumatologists are located at larger, more academically-oriented training programs.

Table 17:  Characteristics of Responding Pediatric Residency Programs, 2004 Survey of Program Directors

^a Among those programs with any Internal Medicine/Pediatric Residents
^b Among those programs with any Combined Pediatric Residents

Residency directors also were asked if their program offered a pediatric rheumatology rotation, either on-site or as an away elective; overall, 57.5 percent of programs offered a rotation on-site and an additional 22 percent offered a rotation as an away elective (Table 18).  Over 90 percent of residency programs with a pediatric rheumatologist on staff reported offering a pediatric rheumatology rotation on-site.  Among those programs without a pediatric rheumatologist on staff, 9 percent offered a pediatric rheumatology rotation on-site and 45 percent offered the rotation as an away elective.  Forty-five percent of programs without a pediatric rheumatologist on staff did not offer a pediatric rheumatology rotation.

Table 18:  Characteristics of Pediatric Residency Training by Availability of a Pediatric Rheumatology Rotation, 2004 Survey of Program Directors

^a  Programs could choose more than one provider.
  * Difference between program types significant at p<0.05
 ** Difference between program types significant at p<0.01
*** Difference between program types significant at p<0.001

Programs that lack pediatric rheumatology rotations were significantly more likely to report having a greater percentage of graduates in primary care positions (Table 18).  Directors from 64 percent of programs with on-site rheumatology training estimated that one-half of their graduates practiced in primary care.  In contrast, over 90 percent of directors in programs without a pediatric rheumatology rotation available estimated that over half of their graduates practiced in primary care.

Despite the availability of formal pediatric rheumatology rotations in 79 percent of pediatric residency programs, few pediatric residents elect to take these rotations; only three of these programs (2.4 percent) require a pediatric rheumatology rotation.  In addition, only 11.9 percent of program directors estimate that more than 50 percent of their residents do a formal pediatric rheumatology rotation.  Compared to programs with away electives programs, on-site rotations report having a significantly higher percentage of residents doing a rheumatology rotation.  In programs with on-site training, one-half of directors estimate that more than one-quarter of their residents do a pediatric rheumatology rotation during their training.  Among those programs with an away elective, all directors estimate that 25 percent or less of their residents elect to take this rotation.

Directors were asked to indicate which faculty were involved in four curriculum components relevant to rheumatology:  joint exam, rheumatology laboratory evaluation, JRA diagnosis and JRA treatment.  Directors could choose from one or more of the following:  pediatric rheumatologist, internist rheumatologist, general pediatrician/continuity clinic, and lectures/guest speaker.  Programs were classified into one of nine mutually exclusive categories.  Programs were characterized by the involvement of a pediatric rheumatologist either alone or in combination with other providers; programs that did not report using pediatric rheumatologists in a curriculum component, were then assessed for their use of internist rheumatologists and others.

Pediatric rheumatology curriculum components were taught largely by pediatric rheumatologists independently or in combination with other faculty or guest speakers (Table 19).  A small percentage of programs relied upon internist rheumatologists with or without the involvement of general pediatricians and/or guest lectures to cover these components; a small number of programs relied on general pediatricians.  With the exception of the joint exam component, at least two-thirds of directors indicated that a pediatric rheumatologist was involved in the curriculum components studied.

Table 19:  Faculty Involvement in Pediatric Rheumatology Curriculum, 2004 Survey of Program Directors (n=126)

^a “Other” includes internist rheumatologist and/or general pediatrician and/or lectures/guest speakers and/or other rheumatologist.
^b “Other” includes general pediatrician and/or lectures/guest speakers and/or other rheumatologist.

When one examines faculty involvement in the pediatric curriculum components by availability of a staff pediatric rheumatologist, the importance of having a pediatric rheumatologist on staff becomes more readily apparent.  Faculty involvement was collapsed into three mutually exclusive categories:  pediatric rheumatologist involved, internist rheumatologist involved without a pediatric rheumatologist, and general pediatrician or other provider.  These classifications were compared between programs with and without staff pediatric rheumatologists for each of the four curriculum components.

Programs without pediatric rheumatologists at their institutions were significantly more likely to rely on internist rheumatologists and/or general pediatricians to address these curriculum areas (Table 20).  For each curriculum component, nearly 100 percent of the programs with a pediatric rheumatologist on staff at their affiliated institution report their involvement in these training areas.  In contrast, more than two-thirds of programs without pediatric rheumatologists at their affiliated institutions report that training in these areas was the domain of internist rheumatologists, general pediatricians, continuity clinics, and lectures and/or non-rheumatologists.  It is interesting to note that approximately one-third of the programs without pediatric rheumatologists on staff nonetheless were able to involve them in their resident training.

Table 20:  Faculty Involvement in Pediatric Rheumatology Curriculum Components by Availability of a Staff Pediatric Rheumatologist on Site, Pediatric Residency Director Survey (n=126)***

^a Except pediatric rheumatologists
*** For each curriculum component and faculty classification, the difference between programs with and without staff pediatric rheumatologists are significant at p<0.001.

Availability of Pediatric Rheumatology Training in Medical Schools

Dr. Charles Spencer, president of the AAP Section of Pediatric Rheumatology and Professor of Pediatrics at the University of Chicago and La Rabida Children’s Hospital and Research Center, received a three-year award from the American College of Rheumatology to assess the status of pediatric rheumatology education in medical schools.  Dr. Spencer found that of 53 responding clerkship directors (50 percent), one-quarter lacked a pediatric rheumatologist at their institutions on at least a part-time basis.  Over 20 percent relied on a non-pediatric rheumatologist to teach pediatric rheumatology.  More than three-quarters reported that a pediatric rheumatologist does not lecture to medical students during their pediatrics clerkship.  Only one-half of programs offer a pediatric rheumatology rotation to medical students.  Thus, exposure to pediatric residency in medical school is quite low. ³⁴

Pediatric Rheumatology Visiting Professorship Programs

One approach to expanding exposure to pediatric rheumatology training within pediatric residency is Pediatric Rheumatology Visiting Professorship Programs.  Through these programs pediatric rheumatologist visiting professor programs are offered to schools that lack a pediatric rheumatology program. ³⁵  However, funding of such programs are limited.  Thus, it has only a limited ability to address the needs of the many institutions without pediatric rheumatologists on staff.

Issue 2:  Insufficient Clinical Care Cost Recovery/ Financing Pediatric Rheumatology Positions

Initial and follow-up patient visits in pediatric rheumatology are quite lengthy and involved.  However, they do not usually include separate billable procedures that generate additional funds.  Many other specialists often perform procedures that increase revenue.   The revenue from pediatric rheumatologist extended office visits is insufficient to cover costs.

Adequacy of Reimbursement

Medicaid provides health insurance for approximately 12 percent of the under 18 population in the United States.  In contrast, pediatric rheumatologists estimate that one-third of their patients are covered by Medicaid. ²²  As such, Medicaid reimbursement is particularly relevant to the financial viability of pediatric rheumatology practices.

Although past studies have shown that Medicaid and State Children’s Health Insurance Programs (SCHIP) improves access for children who would otherwise be uninsured, Medicaid enrollees are significantly less likely than children with private coverage to receive a referral to specialty care, to receive specialty care, or to receive that care from a Board-certified physician. ^{7, 36-39}  This pattern is similar to previous research, which, while not specific to specialty care, has shown that children with Medicaid have greater unmet needs than children with private insurance and fewer unmet needs than uninsured children. ^{9, 40-42}  Some studies have suggested that the discrepancy in access observed between Medicaid-insured children and their privately insured counterparts is due, in part, to inadequate provider reimbursement. 

The existing literature leaves no doubt that the adequacy of reimbursement, especially from public insurers, is insufficient to ensure access to pediatric subspecialty care.  A study of access to surgical care for children with government-sponsored insurance found that only 27 percent of surgeons were willing to provide care to children with Medi-Cal vs. 97 percent being willing to treat privately insured children.  Excessive administrative burden and low monetary reimbursement from the procedure were cited by 96 percent and 92 percent of respondents.  One study in California found that children insured by Medi-Cal experienced significantly greater delays in treatment for fracture than privately insured peers; the authors of this study showed the Medi-Cal reimbursement for a follow-up visit for a broken arm was less than one-half that of Medicare. ⁴³ A study of access to care for enrollees in SCHIP in five States found that that low reimbursement rates dissuaded pediatric subspecialists from participating in the program and contributed to hospitals’ inability to retain pediatric subspecialists. ⁴⁴

Low levels of reimbursement may not be limited to Medicaid-insured patients, however.  A study of developmental-behavioral pediatricians found that inadequate reimbursement was the most commonly reported constraint to seeing more patients. ⁴⁵  Likewise, a survey of State Title V directors found that 44 percent cited inadequate reimbursement as a significant access barrier to pediatric subspecialty care receipt among children with health care needs. ⁴⁶   These directors cited increased reimbursement rates as essential to improving the availability of and access to medical homes for children with special needs. 

Reimbursement & Recruiting Pediatric Rheumatologists

In the survey of pediatric residency directors, respondents were asked, to the best of their knowledge, if efforts had been made to recruit one or more pediatric rheumatologists to their institutions in the previous 5 years.  Nearly one-quarter had successfully recruited one or more pediatric rheumatologists and an additional 11.2 percent had been unsuccessful in their recruitment efforts.  Over one-third of programs reported an interest in recruiting a pediatric rheumatologist but an inability to recruit for financial or other reasons.  Only 13 percent of the programs felt they did not need such a provider and 16 percent did not know about their institution’s interest in hiring a pediatric rheumatologist.

Open-ended comments from these residency directors suggest that financial factors heavily influence their programs ability to hire a pediatric rheumatologist:

• “… It should be noted that our rheumatologist functions as a generalist and teacher both in the clinic, newborn nursery and on the pediatric floor.  He spends the majority of his time in these endeavors, not in rheumatology … We would not be able to support a full-time rheumatologist and consider ourselves fortunate to have one who is also such a wonderful generalist and teacher.”
• “The major barriers to bringing pediatric rheumatology to our center are lack of available ped[iatric] rheumatologists to recruit, funding based on clinically generated dollars (although our referral base is at the level to theoretically support the position), convincing [institution name] re: the financial viability of the position, finding ancillary dollars (education, research, etc) in a community-based academic residency, providing cross-coverage for on-call, etc.”
• “We probably do not have sufficient patients within our tri-county referral area to justify a full-time on-site Peds Rheumatologist, nor do we have anything close to the budget for same …”
• “To get an on-site specialist we would have to show that it is "cost-effective" to hire them, and with our population this would not be the case.”

Issue 3:  Research Requirements Limit Patient Access to Care

Pediatric rheumatologists generally divide their professional time across three activities:  patient care, research, and medical education.  Past research shows that having an interest in research and medical education is positively associated with pursuit of subspecialty training among pediatricians. ^{9, 47, 48}  In other words, pediatric trainees with an interest in research are significantly more likely than those with lower levels of interest in research to pursue subspecialty training.  Therefore, efforts to increase the supply of pediatric rheumatologists may be improved by acknowledging the importance of research opportunities as an incentive to subspecialization.

Data from the AF/ACR survey reveal that the majority of pediatric rheumatologists spend less than 20 percent of their time in research while a small percentage of these providers spend the majority of their time in research activities; suggesting that most pediatric rheumatologists specialize in either research or patient care (Figure 6).  The level of research involvement among pediatric rheumatologists was significantly greater than internist rheumatologists, highlighting the relative importance of competing professional demands for pediatric rheumatology.

Figure 6:  Percent of Professional Effort Spent on Research by Specialty

[D]
Source: AF/ACF Survey, 2004

There has been no investigation to date of the extent to which the current supply of pediatric rheumatologists affects their involvement in research; however, one-sixth of pediatric rheumatologists responding to the AF/ACR survey had decreased their patient care time in the previous 5 years because they obtained salary from a research source.  As a result, successful receipt of research funding limits the amount of time that these providers are available for patient care. 

In addition to personal interest in research, the transition to increased reliance on research-based funding may be due, in part, to incentives inherent in academic medical practice.  As a cognitive, or non-procedural, pediatric subspecialty, pediatric rheumatology tends to generate low levels of clinical revenue because it involves mainly outpatient evaluation and management.  Due to low levels of clinical revenue, academic medical centers often find it difficult to underwrite the costs of cognitive pediatric subspecialty practices.  For this reason as well as the general mission of academic medical centers to foster research, many pediatric rheumatologists experience pressure to obtain research funding.  Many research funding sources, such as those discussed in the following sections, require that providers devote a certain percentage of time to research endeavors, thereby forcing a decrease in their involvement in patient care. 

Pediatric Rheumatology Research Funding

Using data from the National Institutes of Health’s (NIH) CRISP database, all NIH grants awarded to individuals with “pediatrics” or “rheumatology” in the position title between 1999 and 2003 were identified.  Data from the CRISP database were merged with pediatric rheumatologists’ data from the ACR using the first and last names of the principal investigator.  Of 361 unique grants, only 7 were awarded to pediatric rheumatologists listed in the ACR file and all 7 went to the same two doctors.  This suggests that few pediatric rheumatologists are successfully competing for NIH funding, but the completeness of the CRISP data for pediatric rheumatologists is not known. 

While many NIH grants, such as Small Grant Awards (R03) and Investigator Initiated Grants (R01) do not specify the amount of time that a physician must be involved in the grant, Research Career Awards generally require that the recipient spend 75 percent of their professional effort in research endeavors.  Consequently, pediatric rheumatologists receiving these grants spend 25 percent or less of their time in patient care.

Additional Funding Sources

Concerns about fellowship and research funding have led to the development of specific programs that fund either fellowship training or junior researchers.  The American College of Rheumatology, for example, has a Clinical Investigator Fellowship Award that provides training in clinical investigation to rheumatology fellows or rheumatologists early in their careers. ⁴⁹ Similarly, the ACR and the Arthritis Foundation specifically provide awards for fellows during training and for young investigators.  Some of these awards target pediatric rheumatologists while others fund both internist and pediatric rheumatologists.  The awards provide salary support to physicians in fields where clinical revenues are often insufficient to fund positions; however, they may lead to reductions in the amount of time a provider spends in patient care.

The NIH sponsors a Pediatric Research Loan Repayment Program (Pediatric Research LRP) directed to physician and non-physician researchers active in pediatrics.  In exchange for a 2-year commitment to pediatric research, the NIH will pay up to $35,000 of educational expenses, an additional 39 percent to cover federal taxes, and reimburse awardees for State taxes due on the payments.  In 2003 almost 500 people applied for the Pediatric Research LRP; nearly 300 received awards.  This program requires, however, that recipients spend 50 percent of their time in research endeavors, again limiting their availability for patient care. 

While programs like the Pediatric Research LRP are not specifically targeted to pediatric rheumatology, they provide pediatric rheumatology fellows and young investigators with opportunities to discharge some of the financial burdens of undergraduate and graduate medical education.  Along with targeted programs like those available through the American College of Rheumatology and the Arthritis Foundation, these efforts attempt to address some of the potential causes of pediatric rheumatology shortages.  While these programs do provide funding for pediatric rheumatologists’ salaries, research requirements detract from their availability for full-time patient care and create a tradeoff between the availability of patient care and the scientific advancement of the field through research.

Pediatric rheumatologists largely function as patient care providers, educators, and researchers.  Supply constraints limiting their available research time may delay much-needed advances in the cure of pediatric rheumatic diseases.  The more time a provider devotes to research, the less time they have available for patient care.  The conundrum is that research is at the expense of clinical care or vice versa. 

Summary

Over one-third of medical schools and over 40 percent of pediatric residency programs lack a pediatric rheumatologist on staff, decreasing exposure to this field.  As a consequence, medical students and pediatric residents may lack sufficient experience with pediatric rheumatology to develop an interest in the field or to feel comfortable co-managing the care of children with rheumatic diseases.  As such, decreased availability of pediatric rheumatologists in training sites may perpetuate shortages and decrease the availability of substitutes for pediatric rheumatology care.  This vicious cycle increases demand for pediatric rheumatologists by increasing the number of children referred for evaluation of conditions, such as fever of unknown origin and joint complaints that could sometimes be addressed by adequately trained primary care providers. 

A unique feature of pediatric subspecialties, like pediatric rheumatology, is that the same pool of providers sees patients, performs research, and educates physicians-in-training.  Several studies suggest that research opportunities are a major motivation to subspecialize among pediatricians; therefore, many pediatric rheumatologists likely entered the field in order to do research as well as patient care.  Furthermore, academic medical centers are the dominant employer of pediatric rheumatologists and the demands of academic practice dictate much of their professional behavior.  Non-procedural or cognitive pediatric subspecialties often fail to generate sufficient clinical revenue due to low reimbursement rates for non-procedural visits.  As such, academic medical centers often rely on research revenue to fund pediatric subspecialty positions.  Without these research dollars, fewer academic medical centers may be able to afford pediatric rheumatologists.  The survey of pediatric residency directors found that one-third of programs would like to hire a pediatric rheumatologist but were unable to do so for financial or other reasons.  Thus, involvement in non-patient care activities, such as research, may be essential to financing positions for pediatric rheumatologists while negatively affecting the amount of time a provider has available for patient care.