EARLIER REFERRAL FOR SUBSPECIALTY EPILEPSY EVALUATION CORRELATES WITH PATIENTS[ssquote] PERCEPTION OF BETTER PRIMARY NEUROLOGICAL CARE
Abstract number :
3.127
Submission category :
Year :
2002
Submission ID :
1510
Source :
www.aesnet.org
Presentation date :
12/7/2002 12:00:00 AM
Published date :
Dec 1, 2002, 06:00 AM
Authors :
Frank Gilliam, Paul A. Garcia, David M. Ficker, Paul H. McCabe, Brien J. Smith, Layne Moore, Carl W. Bazil, Jane G. Boggs, Victoria J. Vahle. Neurology, Washington University, St. Louis, MO; Neurology, University of California, San Francisco, CA; Neurolog
RATIONALE: Recent studies have reported mean durations of refractory epilepsy of about 20 years prior to epilepsy subspecialty or presurgical evaluations at tertiary care centers (Wiebe et al, N Engl J Med 2001;345:311-18; Gilliam et al, Neurology 1999;53:687-94), but little information is available regarding patients perception of this experience.
METHODS: This was a prospective, eight center study of patients perceptions of their medical care prior to evaluation in a university-based tertiary epilepsy center. We used the Epilepsy Specialty Clinic Referral Survey (22 items) to assess multiple aspects of previous epilepsy care, including patient-perceived need for earlier referral and satisfaction with neurological care. The study was approved by the IRB at each center, and all patients consented to participation in the study.
RESULTS: Two hundred and eighty patients were enrolled from the eight epilepsy centers. The mean age was 36.8 (s.d. 13.5, range 13-72). One hundred and sixty-eight patients were women (60%) and 122 (40%) were men. Sixty-five percent reported uncontrolled seizures for more than one year, with 42% for more than 4 years. One hundred and fifty-eight (63% of the 250 responders to this question) patients reported that they wished that they had been referred earlier. Ninety-five (48% of the 250 responders) reported that they were less than very satisfied with their prior care. Preference for earlier referral was significantly associated with dissatisfaction with prior care (likelihood ratio 29.6; p =0.003).
CONCLUSIONS: Based on results of this prospective study from eight epilepsy centers with a broad geographic distribution within the US, most patients with recurrent seizures would prefer to be referred for tertiary evaluation earlier than the current standard of practice. Earlier referral is also significantly associated with greater patient-reported satisfaction with prior care.
[Supported by: NIH Grants NS01794 and NS40808]