Pediatric Rheumatology Online Journal → August 2003 → Health-Care Delivery → Abstract #173

ACCESS TO, AND SATISFACTION WITH PEDIATRIC RHEUMATOLOGY CARE

A. Kunkel,¹ S. J. Wright,¹ J. M. Belmont,¹ I. S. Szer,² B. E. Ostrov,³ M. H. Passo,⁴ D. A. Anderson,⁵ C. B. Lindsley.¹

¹Pediatric Rheumatology, University of Kansas Medical Center, Kansas City, KS, United States; ²Rheumatology, Children's Hospital of San Diego, San Diego, CA; ³Pediatric Rheumatology, Hershey Medical Center, Hershey, PA; ⁴Rheumatology, Children's Hospital, Cincinnati, OH; ⁵AJAO, Arthritis Foundation, Atlanta, GA

The American Juvenile Arthritis Organization (AJAO), a council of the Arthritis Foundation (AF), developed a survey for parents of children with juvenile arthritis (JA) focusing on access to pediatric rheumatology subspeciality care. Surveys were distributed at the 2000 AJAO National Conference and AF Chapters and were completed by 943 families of 978 children with JA from 44 states. 49% had been diagnosed for 4 years. Demographics: Caucasian 88%; female 75%.
5% had never seen a pediatric rheumatologist (PR). Mean age at diagnosis was 2.7 years for children treated by PR, 8.6 years for those not treated by PR. For those never treated by PR, 44% were diagnosed by adult rheumatologists. Of these, 26% could not get referral to PR; 18% felt they lived too far away; 15% felt PR treatment was unnecessary; 38% were unaware of PR; 3% had no insurance. Children treated by PR were referred by: pediatricians 56%; family practitioners 19%; orthopedists 15%; adult rheumatologists 8%. 1% had no insurance. Overall, respondents reported yearly out-of-pocket expense averaged $1000 66%; $1000-$2500 22%; $2500 12%. Concerning their current care, PR families were very satisfied 59%, satisfied 34%, unsatisfied 7%, while non-PR families were very satisfied 40%, satisfied 42%, unsatisfied 17%. Thus, those in the care of a PR were generally more satisfied with their care (P=0.006).
The majority profile for children with JA shows the child's being diagnosed within 6 months of symptom onset by a PR and now being cared for by a PR in an outpatient clinic 4+ times per year, traveling up to 50 miles one way. The 10% who think they do not see the PR often enough cite distance and insurance restrictions. These survey data point to increased family satisfaction when children with JA are treated by pediatric rheumatologists.