Access to Care for Children with Rheumatic Diseases

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Title:

Access to Care for Children with Rheumatic Diseases

Category:

11. Pediatric rheumatology — clinical and therapeutic aspects

Author(s):

Helen M. Emery1, is Grey1, von Scheven2. 1Childrens Hospital and Regional Medical Center, Seattle, WA; 2University of California, San Francisco, San Francisco, CA

Presentation Number:

1432

Poster Board Number:

208

PURPOSETo characterize referral patterns to two pediatric rheumatology centers; to identify obstacles to referral and causes for delay in treatment; to determine the impact of delayed referral on functional outcome; and to evaluate the impact of physician education programs on referral patterns.METHODSDisease manifestations (onset and type of symptoms), referral characteristics (previous physician evaluations, time of initial referral, and perceived obstacles to referral), and demographic characteristics, including distance from the pediatric rhematology resource and insurance provider, were obtained by retrospective chart review and parental questionnaire for subjects presenting to two pediatric rheumatology centers. Disease severity at presentation to the center was assessed by chart review and the Juvenile Arthritis Quality of Life Questionnaire (JAQQ). Physician educational programs were presented including seminars on childhood musculoskeletal problems and rheumatic diseases, a two hour “Meet the Professor” style seminar for adult rheumatologists, and recently a web-based version of the curriculum.

RESULTSAll new patients referred to site #1 between August 2003 and April 2005 were invited to participate. 245 (40%) consented. 143 were diagnosed with a rheumatic disease (RD) at the first visit and 102 had another etiology for their symptoms (nonRD).

For RD patients, the time interval from seeing a primary care physician to the first pediatric rheumatology visit ranged from 2 weeks to 60 months (median 4 months) for RD patients compared with nonRD patients - 4 weeks to 60 months (median 6.3 months).

Of 245 patients at site #1, 67 (29%) of patients traveled less than 20 miles to clinic; 24 (10%) traveled over 200 miles. Increased travel distance of over 200 miles doubled time interval to referral compared with patients less than 20 miles from the center.

Only five percent indicated difficulty with insurance approval.

99 (40%) were first referred to another specialist, usually orthopedics (49) followed by adult rheumatology, gastroenterology, and dermatology.

Lower functional scores by JAQQ was associated with increased time to referral.

At site #2, the interval between first visit to a primary care physician and first visit to the pediatric rheumatologist showed a median of three months (range 2 weeks to 60 months) (n=154). Impact of the educational intervention on referral patterns are being monitored.

CONCLUSIONSChildren with musculoskeletal symptoms are often referred late to a pediatric rheumatologist, resulting in more functional limitations than if the diagnosis is made and treatment started earlier. Distance from a pediatric rheumatology center and inappropriate referral to other subspecialists by primary physicians, but not insurance characteristics, appears to be one explanation for delayed referral. The impact of physician education on referral patterns and JAQQ scores is being evaluated at both sites.

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