Abstract

Determine frequency of remissions, relapses, and pharmacoresistance over two decades. Develop a composite measure of seizure control over that time. Community-based cohort of children with newly diagnosed epilepsy prospectively followed for up to 21 years with frequent calls and periodic medical record review. Multiple periods of 1-, 2-, 3-, and 5-year remission with subsequent relapses were recorded. Other outcomes included pharmacoresistance (failure of two adequately used drugs), early remission and early pharmacoresistance by 2 years, and complete remission at last contact (CR-LC, 5 years both seizure- and drug-free at last contact). A composite summary of seizure course was created with eight categories ranging from early sustained remission and CR-LC (best) to never achieving a 1-year remission (worst). Five hundred sixteen of 613 participants were followed ≥10 years. An initial 1- 2-, 3-, and 5-year remission occurred, respectively, in 95%, 92%, 89%, and 81%. Relapses followed in 52%, 41%, 29%, and 15%, respectively. Repeated remission after relapse was common. Up to seven 1-year, five 2-year and 3-year, and two 5-year remissions were recorded per participant. Pharmacoresistance at any time, early pharmacoresistance (<2 years), early remission, and cr-lc occurred in 118 (22.9%), 70 (13.6%), 283 (54.8%), and 311 (60.3%). composite outcomes were early sustained remission with cr-lc (n="172," 33%); later but then sustained remission with cr-lc (n="51," 10%); one (n="61," 12%) or more (n="27," 5%) remission-relapse episodes but then cr-lc; various non-cr-lc outcomes (n="179," 35%); and never achieved 1-year remission (n="26," 5%). these patterns varied across groups defined by epilepsy type and presence of brain insults or neurodisability (p><0.0001). the seizure prognosis of pediatric epilepsies is highly variable. most patients follow complex courses not easily summarized by remission status at the end of a period of follow-up. these complexities may facilitate efforts to understand the impact epilepsy has on young people entering adulthood. determine frequency of remissions, relapses, and pharmacoresistance over two decades. develop a composite measure of seizure control over that time. community-based cohort of children with newly diagnosed epilepsy prospectively followed for up to 21 years with frequent calls and periodic medical record review. multiple periods of 1-, 2-, 3-, and 5-year remission with subsequent relapses were recorded. other outcomes included pharmacoresistance (failure of two adequately used drugs), early remission and early pharmacoresistance by 2 years, and complete remission at last contact (cr-lc, 5 years both seizure- and drug-free at last contact). a composite summary of seizure course was created with eight categories ranging from early sustained remission and cr-lc (best) to never achieving a 1-year remission (worst). five hundred sixteen of 613 participants were followed ≥10 years. an initial 1- 2-, 3-, and 5-year remission occurred, respectively, in 95%, 92%, 89%, and 81%. relapses followed in 52%, 41%, 29%, and 15%, respectively. repeated remission after relapse was common. up to seven 1-year, five 2-year and 3-year, and two 5-year remissions were recorded per participant. pharmacoresistance at any time, early pharmacoresistance (><2 years), early remission, and cr-lc occurred in 118 (22.9%), 70 (13.6%), 283 (54.8%), and 311 (60.3%). composite outcomes were early sustained remission with cr-lc (n="172," 33%); later but then sustained remission with cr-lc (n="51," 10%); one (n="61," 12%) or more (n="27," 5%) remission-relapse episodes but then cr-lc; various non-cr-lc outcomes (n="179," 35%); and never achieved 1-year remission (n="26," 5%). these patterns varied across groups defined by epilepsy type and presence of brain insults or neurodisability (p><0.0001). the seizure prognosis of pediatric epilepsies is highly variable. most patients follow complex courses not easily summarized by remission status at the end of a period of follow-up. these complexities may facilitate efforts to understand the impact epilepsy has on young people entering adulthood.>

DOI 10.1111/epi.12862