Quality of life among Brazilian children with epilepsy: Validation of a parent proxy instrument (QVCE-50)

Summary Purpose To analyze the validity and reliability of an epilepsy specific health related quality of life (HRQL) instrument (QVCE-50), constructed for Brazilians. The QVCE-50 comprises the following domains: physical (9 items), psychological (18 items), social/familial (7 items), and cognitive/educational (16 items). Items were scored on a four point scale. Domains were equally weighted using percent scores. The questionnaire ends with a quality of life scale scored 0–10 and a space for free observations. Methods A total of 77 children with epilepsy were consecutively seen in a neuropaediatric ambulatory unit. Parents or caregivers responded to the QVCE-50 and a Portuguese version of ICIS (Impact of Childhood Illness Scale). QVCE-50 was analyzed for internal consistency, reliability, content and concurrent validity. Clinical and socio-demographic variables were also analyzed. Results Socio-demographic and clinical variables that differed in at least one domain were age, sex, time since diagnosis, epilepsy family history, and antiepileptic drug used. Internal consistency, analyzed by Cronbach's alpha, showed good results for total and domain scores: physical (0.68), psychological (0.86), socio-familiar (0.70) and cognitive-educational (0.91). Total scores on the QVCE-50 and ICIS are inversely correlated (Pearson's r = −0.74, p < 0.0001). The Intraclass Correlation Coefficients for test–retest reliability were acceptable: physical (0.51), psychological (0.62), socio-familiar (0.66), cognitive-educational (0.85) and total (0.77), p < 0.0001. Conclusions QVCE-50 has good psychometric properties. It is a useful tool for analyzing HRQL in children with epilepsy for Portuguese speakers, especially Brazilians. Other properties should be further tested, such as responsiveness to drug and surgical treatment, capacity of distinguishing among seizure control categories and etiology (with a larger sample) and impact of psychiatric and cognitive co-morbidities.