Long-term outcomes of persons with Lyme disease

Context Few data exist about the long-term outcomes of patients with Lyme d isease. Objective To assess the long-term outcomes of patients with Lyme disease. Design Two-part project including a community-based longitudinal cohort stu dy and a matched cohort study, Setting and Participants Six hundred seventy-eight patients identified from a random sample of all reports of Connecticut residents with suspected Lym e disease submitted to the Connecticut Department of Public Health from 198 4-1991 were evaluated in the longitudinal study; for a random subsample of 212 patients from the larger study, 212 age-matched controls without Lyme d isease also were enrolled. Main Outcome Measures Self-reports or parents' reports of symptoms and abil ity to perform certain daily activities since diagnosis of Lyme disease; sc ores on the 36-item Short-Form Health Survey and the Center for Epidemiolog ic Studies-Depression scale, for adults, by case-definition status and betw een patients and controls. Results Of the 678 patients, 51.6% were female, 34.4% were children, and 64 .3% met the national surveillance case definition for Lyme disease. Most pa tients (85.5%) were treated with antimicrobial agents, Interviews were cond ucted a median of 51 months after diagnosis (range, 15-135 months). An incr eased frequency of symptoms (eg, pain, fatigue) or of difficulty with daily activities (eg, performing housework, exercising) was reported by 69% of t he patients, although few (19%) of these problems were attributed to Lyme d isease. Whenever there was a statistically significant difference in the fr equencies of either increased symptoms or increased difficulties with typic al activities between those who did or did not meet the surveillance case d efinition, in all instances the greater frequency of problems was in the gr oup that did not meet the case definition. The frequencies of reports of bo th increased symptoms and increased difficulties with typical activities am ong patients who had been diagnosed as having Lyme disease were similar to those among age-matched controls without Lyme disease. Conclusions: In this cohort, although many patients reported increases in s ymptoms and/or increased difficulties with typical daily activities between 1 and 11 years after diagnosis of Lyme disease, the frequencies of these r eports were similar to the frequencies of such reports among age-matched co ntrols without Lyme disease.