NAPNAP 2012: Pediatric Rheumatology…Closing the Gap

According to a report commissioned by the US Department of Health and Human Service’s Health Resources and Services Administration, fewer than 200 pediatric rheumatologists are in practice in the US. Pediatric rheumatology is not represented among 30-40% of US medical schools and pediatric residency programs and, perhaps even more alarming, the report found that 13 states lack a single pediatric rheumatologist. The report concluded that 75% more pediatric rheumatologists are needed in the coming years. Congress is currently deliberating legislation that would increase funding for pediatric rheumatology training programs.

Annelle Reed, MSN, CPNP, a nurse practitioner who specializes in pediatric rheumatology at the Children’s Hospital of Alabama, called upon pediatric nurse practitioners to close the gap. Reed presented attendees with a primer in immunology. She explained the roles of the immune system and inflammatory response in pediatric rheumatic diseases, a group of inflammatory autoimmune disorders. While individually reviewing more than ten disorders, she covered presentations, shared strategies and clues to diagnosis, and explained treatment options. Wherever applicable, Reed included photographs to aid recognition of distinguishing symptoms such as rash, joint swelling, atrophy, growth abnormality, or lymphadenopathy.

The overarching theme throughout the presentation was that aggressively treating and controlling inflammation is a high priority because of the deleterious impact it has on development. Inflammation is controlled through variable combinations of drugs like steroids; disease-modifying antirheumatic drugs (eg, methotrexate, Arava®, or Cellcept®); and biologics (eg, Humira®, Kineret®, Rituxan®, and Orencia®).

Reed also talked about the importance of using laboratory tests appropriately. For example, a positive antinuclear antibody (ANA) test should always be followed by additional autoantibody testing. She emphasized, “A positive ANA is not enough to refer. It is just frustrating for everyone... probably the majority are referrals are kids that only have a positive ANA and nothing else, or [the referring providers] tell us nothing else. We just need more information.” Because of the shortage of pediatric rheumatologists, most rheumatology practices have to review all records before scheduling appointments. Providing titer and autoantibody information for referrals can mean the difference between the affected child getting timely treatment or having to wait months before being seen in the specialty clinic.

The American College of Rheumatology website offers valuable resources for your practice or your patients, including guidelines on how and when to refer to rheumatology.