COMMENTARY

CHALLENGES IN PEDIATRIC RHEUMATOLOGY: GOALS

FOR 2025

Pediatric Rheumatology (PR) has come a long way since Barbara Ansell and Eric Bywaters organized the Taplow Unit in the United Kingdom in the late 1940’s. A concrete measure of progress is the attendance at the recent Park City V and PRES meetings. What started as small meetings (approximately 30 at Park City I in 1976) have now grown to meetings of over 300 pediatric rheumatologists from all over the world. There has been much progress but there is still so much to be done.

CHALLLENGE # 1: MORE PEDIATRIC RHEUMATOLOGISTS

Do we really need a larger pediatric rheumatology workforce around the world? Definitely. Beyond a doubt. Why? Let’s start with education. In the United States (US), where pediatric rheumatology has been recognized as a subspecialty for 3 decades and has an organized fellowship training system and board certification, at last count there were 49 of over 150 medical schools without a pediatric rheumatologist. In those medical schools and their associated medical centers, there may be an adult rheumatologist, allergist-immunologist, neurologist, or nephrologist, or other pediatric subspecialists providing patient care for children with rheumatic diseases.

For the moment, let’s assume that this situation has no negative effect on patient care. But in those centers there appears to be minimal or no PR education for pediatric residents, family practice residents, medical students, and other professionals. It is not unreasonable to assume that too many of these physicians and professionals are starting their careers not knowing how to do a good joint exam on a young child or having any familiarity with our PR universe. This lack of basic PR knowledge likely translates into delayed diagnoses and referrals with inadequate early treatment. This lack of optimal PR education is no doubt prevalent in many regions of the world. Yes, we need better PR education.

What about PR workforce issues and patient care? It is not surprising that there are no published studies on the effects of the lack of access to a pediatric rheumatologist on adequate patient care. The evidence is more anecdotal and indirect. But, with apologies to many capable adult rheumatologists who care for children, it is self-evident to pediatric rheumatologists that the level of care provided for children with rheumatic disease in any community improves with the availability of pediatric rheumatologists. No doubt the same can be said for other pediatric subspecialists. Who would want an adult cardiologist caring for a child with congenital heart disease if a pediatric cardiologist could provide this care? Who would want a child with cystic fibrosis treated by an adult pulmonologist? The answer: Not many pediatricians, parents, or families. In the US, the capitalistic medical marketplace also provides an answer. Pediatric rheumatology business, as well as that of other pediatric subspecialists, continues to grow (source: American Academy of Pediatrics surveys 2001-2003).

There are definite PR access problems in most countries of the world, including North America. In the US and other countries, pediatricians who do less than 10% PR, adult rheumatologists, dermatologists, nephrologists, neurologists, and other specialties provide too much PR care, perhaps as high as 50%. The PR workforce in the US grew steadily in the 1970’s and 1980’s but then has had much slower growth in the 1990’s due to a government and “organized pediatrics” emphasis on primary care. It is getting better as fellowship numbers have improved in 2002-2003, but there are still many underserved areas in the US. There’s also the demographic hurdle likely in 2010-2030 when many baby-boomers trained in the 1970’s and 1980’s retire. To have a pediatric rheumatologist within a reasonable travel distance, meet educational needs, and bridge the demography gap, the US medical system may need as many as 500 clinical pediatric rheumatologists by 2025. Yes, we need more trainees (perhaps 100 fellows per year) and many more young pediatric rheumatologists.

Do these projections sound far-fetched? Believe me, they really aren’t. There appears to be a build-in, self-fulfilling workforce paradigm, keeping us in a negative workforce balance. Ideally the more pediatric rheumatologists we train, the better we educate medical students and residents, the longer we provide excellent care, the more referrals we get, the more pediatric rheumatologists we need up until the referral limits are saturated or the total number of patients in a country are adequately diagnosed and treated. Of course, in the real world in any medical system, pediatric rheumatologists will never see all children with rheumatic disease or exhaust the patients to be seen.

Yet in the middle ground of the evolving PR workforce, demand will probably outpace supply in the next two decades. The more we train, we educate, we demonstrate the worth of our niche, the more patients, families, consumers, and the pediatricians will beat a path to our door. Barring imminent cures, the number of referrals and complexity of disease may keep going up, year-in, year-out. So without a miraculous jump in fellowship numbers, we may constantly remain behind our workforce needs, up until demand finally levels off and a workforce equilibrium is achieved in the future, likely well after my retirement.

There is also the issue of the ideal number of pediatric rheumatologists that may be needed per medical center. This number may vary greatly by country, medical system, and medical center. In the US and Canada, it would appear that the critical mass for a pediatric rheumatology “center of excellence” may be about 5 pediatric rheumatologists. This hypothetical center might include 2-3 researchers and 2-3 clinicians with adequate nursing, social worker, physical and occupational therapy, and secretarial support. Until that number of pediatric rheumatologists is reached and adequate support obtained, each center may struggle with meeting its clinical, educational, and research goals.

North Americans should not lose perspective. In some ways, the situation in the US and Canada appears better than some other areas of the world. At the APLAR meeting in December 2002, Prudence Manners noted that there were 179 Board-certified pediatric rheumatologists in the US for approximately 80 million children. She then compared that ratio to 10 pediatric rheumatologists with fellowship training for 1.2 billion children in the Asia-Pacific area. Enough said. Remarkably, Prudence is aggressively addressing this need in Asia by establishing an online education diploma program from the University of Western Australia. May her project succeed wonderfully. So workforce needs are paramount everywhere and may be especially critical in areas outside North America and Europe. Pediatric rheumatologists in North America and Europe should do everything they can do facilitate workforce growth around the world.

CHALLENGE #2: MORE PR SCIENTISTS, CLINICAL AND BENCH

Pediatric rheumatology has too few scientists. They are the most valuable of our peers, pediatricians who can advance our field and science in general. Department Chairpersons value them. They bring in outside grant funding, pay their own way, and enrich academics. They teach residents and medical students. But they are difficult to cultivate in PR. Why? PR is a demanding clinical field with heavy case management requirements. If the clinical demands of PR are allowed to burden PR scientists, they are often doomed to a short scientific career. These scientific colleagues must be protected and should be nourished at centers of excellence with sufficient clinicians to provide protection. We need to encourage more capable fellows to become researchers, find them funding for extended fellowships, and protect them as junior faculty, giving them time to become independent researchers. If we need 500 clinicians, we need 200-300 PR scientists. Dreamer, you say.

CHALLENGE #3: BETTER OFFICIAL RECOGNITION OF PR AS A SUBSPECIALTY

As well as PR workforce needs, our subspecialty needs to achieve governmental recognition as a pediatric subspecialty in every country. To further this end, we need to not look at PR only through a national or regional lens but see PR as a global effort and support development of PR internationally. This development will no doubt require increased efforts in PR education, collaboration, and communication. Attendance at ACR, PRES, APLAR, PANLAR, and other international meetings are the first link in the chain. More North Americans need to go to the PRES and other meetings and more non-North Americans need to attend the ACR meeting.

Invaluable progress has been made by the development of the collaborative study groups such as PRINTO, PRCSG, and CARRA and the importance of expansion of these collaborative efforts cannot be overemphasized. The willingness of established experts to travel to other countries for medical meetings and invited lectures is also crucial. The pediatric rheumatology bulletin board has helped immensely in increasing communication and interaction within our peer group. It is a goal of PROJ to increase PR education and communication. Other journals that publish PR research are very important. We should also seriously consider an international PR organization that represents every pediatric rheumatologist.

Each national situation may vary. Medical politics, the nature of each medical system, the predominance of inpatient versus outpatient medical care, and the maturity of PR in any one country may determine the ease of obtaining governmental recognition of PR. Needless to say, the quicker the recognition of PR, the better for all concerned. PRES and PRINTO are ably facilitating this process. Yet progress may be slow at times. PR’s from outside each country may not be able to easily understand or help local physicians overcome the obstacles involved. Ideally, once PR recognition is achieved, a credentialing or board-certification process may aid in further establishing the PR niche and a standard of care. We should help each other in this process in every way we can.

CHALLENGE #4: INDENTIFICATION OF THE PEDIATRIC RHEUMATOLOGISTS OR LOCAL PR RESOURCES.

Every few weeks a query will pop up on the pediatric rheumatology bulletin board: Does anyone know if there is a pediatric rheumatologist in blank? (Florida, Arizona, Saudi Arabia, Thailand, Russia?) Who can I refer a patient to? We need to know who the best PR physician is in any country, region, state, or city to care for one of our children if they should move. We should compile such an international list, distribute it, make it available free online, and keep it updated. PRINTO is currently developing a website with a map with much of the necessary information for PRINTO countries and centers. The American Academy of Pediatrics is developing a map with similar information on US and Canadian centers. We need to include Asia-Pacific and African countries in this endeavor.

No doubt credentialing questions will be brought up. Who is this person? What training do they have? How do we know they are competent? Where there is a way to credential, it should be used and everyone should be encouraged to join the ACR, PRES, APLAR, and PRINTO. Otherwise, for the sake of children with rheumatic disease, we should non-judgmentally pull in any pediatrician or rheumatologist interested; draw them in, educate them, help them attend PR meetings and develop a pediatric rheumatology program. Each country will usually start with part-time PR, non-fellowship-trained pediatrician or rheumatologist, just as it started in the US in the 1950-1960’s. That’s the natural process.

CHALLENGE #5: BETTER PR EDUCATION

It is mind-boggling if you think about it. How many medical students, pediatric residents, pediatricians, family practice physicians, and others are out there in every country and know little about children with rheumatic disease and PR? Staggering-It must be over 100,000 professionals. This lack of education in PR likely translates into less than optimal medical care. In North America, Europe, Asia, Africa, everywhere, it is our challenge to reach as many of these professionals as possible over time. In my opinion, we should emphasize free or at least reasonable-priced PR education. The cost of established rheumatology journals (paper or online) can be prohibitive in many countries. So our education should shift in part to online, internet education such as the PR Bulletin Board, PROJ, internet interactive or CD-ROM educational programs, and other such efforts. These methods may be able to reach more physicians more quickly. We should do this in an organized, coordinate way, measuring the effectiveness of our efforts.

 We need to gradually have a PR Section in every medical school worldwide. To accomplish this will require education of organized pediatrics, government, and the lay public in every country over time. Pediatric organizations will need to accept what we know to be true. PR is vital for pediatric education and providing medical care for children. Each government will need to be lobbied and shown that no one else can provide this PR care and education-not general pediatricians, not adult rheumatologists, not other pediatric subspecialists. We have to educate the lay public past the “Children get arthritis?” stage and have them understand the true prevalence of these illnesses and what a pediatric rheumatologist can do.

CHALLENGE #6: COLLABORATION ON A WORLD-WIDE BASIS

I don’t think that it can be emphasized too much that our strength lies in numbers, numbers that we can only achieve internationally. It is my estimate that we have over 1000 pediatricians/rheumatologists world-wide that do a significant percentage of their work in pediatric rheumatology. There are millions of children with JRA and SLE worldwide. It is important to break through the national, regional, and organizational mindsets and allegiances. Think international, not national. Think international, not ACR, AAP, PRES, PRINTO, or other organizations. We would be wise to avoid elitism and rivalries. I suggest that we should be inclusive and embrace our colleagues who care for our children with rheumatic disease no matter who they are, where they have trained, what credentials they have, and bring them into the fold.

Together we can build an international collaborative effort where every child has a chance to be on a treatment protocol where we test our hypotheses and produce evidence-based medicine. Together we can do amazing things by 2025.

Pediatric rheumatology has made amazing progress since Park City I. Yet there are many challenges in front of us. Those of us who have been in the PR trenches awhile will try to do our part; We especially value the help of the new generation of pediatric rheumatologists, your energy, your ideas, your idealism, your love of these special children with rheumatic diseases. Let’s see what we can do by 2025.

Charles H. Spencer

Chicago

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