Rationale:
The challenge for many patients with epilepsy and their families is an important situation to analyze. The Adults with childhood epilepsy have more time living with this complex disease, comorbidities and having the high risk of lower education, financial dependency, poor psychological outcomes, behavioral and psychiatric conditions, and unplanned pregnancy. (1–5)
The transition process should have a strong plan and a multidisciplinary care. If the process is carried out improperly, it may compromise patients response to appointments, treatment, and increasing in the hospitalization rate (6). In Brazil, there is no complete service care that issues and have a multidisciplinary group. In Santo André, state of São Paulo, at University Center ABC, we are starting to identify our specificity, for our population and we have a group with a child neurologist, adult neurologist, social work, psychologist and hebiatrician. In this study the translation of the Epilepsy transition readiness checklist, bulded by task force of Ontário Canadá was done and 30 patients with their families answered this tool and we have the results to show.
Methods:
In this study we have the authorization to do the translation of the English version to Portuguese version. In the next step, two independent native English-speaking teachers fluent in Portuguese translated this consensus version back into English. And the tool was conceptually equivalents.
Thirty adolescents in regular follow up at the Transicion Epilepsy service, Centro Universitário Faculty of Medicine ABC, in the period from june 2022 to April 2023, with a diagnosis of epilepsy and their caregivers were include in the study. The questionnaires were applied, and we analyzed the results after IRB approval.
Results:
Table 1 refers to the sociodemographic characteristics of the patients. The mean age of the patients was 15,1±1,80 years, ranging from 12 to 18 years. Most of the patients are female (56,7%) and 14 patients have incomplete high school education. When asked if they knew what epilepsy was, half answered “yes”.
Table 2 refers to the sociodemographic characteristics of the caregivers who answered the questionnaire. Most of them (51,7%) are between 35 and 44 years old, female (79,3%) and they have graduated until high school (65.5%).
Regarding the response to the questionnaires, all patients were able to answer the questions presented, except for one patient who did not present age data. One of the caregivers did not feel able to answer, since she was the patient's neighbor and not a primary caregiver, but all of them could responded.
Conclusions:
The Epilepsy Transition Readiness Checklist is one of the instruments used to evaluate transition in epilepsy. Brazilian patients understood its questions. We believe that this instrument will be very helpful to evaluate and plan the follow up of these population.
Funding:N/A