Although both parents and physicians have substantial anxiety about Lyme disease, there is little information about the long-term outcomes of patients treated for Lyme disease. To address this issue, we are conducting an on-going, community-based retrospective cohort study of 1200 patients(children and adults) randomly selected from all of the reports of patients with Lyme disease submitted to the CT Dept. of Health (as part of statewide surveillance for Lyme disease) from 1984-91. Medical records were reviewed and parents were interviewed using standardized forms. Investigators blinded to the patients' outcomes classified the accuracy of the diagnoses (probable, possible, or unlikely) based on a modification of CDC's surveillance criteria for Lyme disease. Outcomes included parents' reports of cure and parent-reported functional performance (e.g., amount of work, school or gym missed). To date, we have attempted to contact 1147 potential subjects. Of these, 28% could not be located, 7% refused (or the doctor refused) to participate and 65% were enrolled in the study. Interviews (which occurred a mean of 65.4 months after diagnosis) and reviews of records have been completed for 700 subjects (261 were children <18 years of age) and the first 200 (119 adults, 81 children) have been analyzed.
The mean age of the 81 children reported to have had Lyme disease was 7.9 years. Of the 81 children, 44 (54%) were classified as “probable”, 19 (23%) were classified as “possible” and 18 (22%) were classified as “unlikely” to have had Lyme disease. Only 2 of the children (2.5%) were reported as not cured of Lyme disease. One of these children had only subjective symptoms (arthralgia) and had been classified as being unlikely to have had Lyme disease. The other child had a recurrence of probable Lyme arthritis of the knee. Since being diagnosed with Lyme disease, increased frequencles of absence from school, of being excused from gym class or of fatigue were reported for 10 (12%) of the children, but these changes were attributed to Lyme disease for only 2 of the children. These preliminary results suggest that the prognosis for most children treated for Lyme disease is excellent.
