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Quality of life in epilepsy: a study of Brazilian adolescents.

ABSTRACT: Our objectives were: to assess the QOL of Brazilian adolescents with epilepsy with a specific QOL assessment tool; to compare the adolescents with epilepsy and healthy adolescents using a generic QOL assessment tool; to correlate the 2 different QOL assessment tools (the generic and the epilepsy-specific); and to correlate QOL scores of the adolescents with epilepsy obtained by both tools with physical, psychological and social variables of the disease.Fifty subjects (case group) attending the outpatient clinic of epilepsy of the Clinics Hospital of UNICAMP, Campinas-SP, answered the Brazilian version of the QOL inventory for adolescents with epilepsy--QOLIE-AD-48 and the QOL Questionnaire--WHOQOL-BREF-Portuguese version. Fifty-one subjects (control group) from public schools in Campinas-SP answered only the WHOQOL-BREF.The results showed that adolescents with epilepsy presented a good score of QOL in both tools; overall scores for both groups with WHOQOL-BREF were good, but a statistically significant difference was seen with regards to the Psychological domain of the WHOQOL-BREF favoring the control group. Significant correlations between QOLIE-AD-48 Total and WHOQOL domains were found. Adolescents that were considered seizure-free (P = 0.001), had good perception of seizure control (P = 0.012) and had not had occurrence of seizures in public places (P = 0.001) presented better QOL scores.Brazilian adolescents with epilepsy may present good QOL scores when they themselves consider the disease as under control; physical, social and especially psychological variables associated to the disease may play an important role in these results. As a generic QOL tool, WHOQOL-BREF was sufficient to allow for a comparison between chronic disease bearers and healthy adolescents and showed that the gap in QOL between both populations is not as extensive as once was thought, probably due to better support and adaptation to the disease.

SUBMITTER: Siqueira NF

PROVIDER: S-EPMC4156383 | biostudies-other | 2014

REPOSITORIES: biostudies-other

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Project description:To analyze perceptions of health-related quality of life and associated factors in populations from the Manaus Metropolitan Region.We conducted a population-based cross-sectional study from May to August 2015. Adults aged 18 years and older were selected using probabilistic three-phase cluster sampling and stratified by sex and age, based on official estimates. Quality of life data were collected using the European Quality of Life 5-Dimensions 3-Levels (EQ-5D-3L) along with socioeconomic, demographic, and health perception data. Utility scores were calculated using the Brazilian version of the EQ-5D-3L. Descriptive statistics were derived, and a multivariate Tobit regression model with correction for complex sampling was performed to identify the variables that influence utility levels.A total of 4001 participants were included. The average utility score was 0.886 (95% confidence interval [CI]: 0.881-0.890) with significant differences according to living area (the capital (0.882 ± 0.144) or inner cities (0.908 ± 0.122; p < 0.001)). The dimension for which the highest proportion of people reported moderate to severe problems was pain/discomfort (39%), followed by anxiety/depression (18%). Men had a higher quality of life than women (β = 0.041, p < 0.001). Not working was a factor that increased quality of life compared with being formally employed (β = 0.031, p = 0.037). The poorest people had a lower quality of life than the richest people (β = -0.118, p < 0.001). Better health perceptions increased utility scores (p < 0.001), while being separated decreased the scores (β = -0.052, p = 0.001).Health-related quality of life in the Manaus Metropolitan Region was high, as expected for the general population, and was higher among individuals who lived in the inner cities, men and those in higher social classes. Gender discrepancies and differences in quality of life between the capital and inner cities should be further investigated.

Project description:ObjectiveEpilepsy is a common and serious neurological disorder. This cross-sectional analysis addresses the burden of epilepsy at different stages of the disease.MethodsThis pilot study is embedded within the Australian Epilepsy Project (AEP), aiming to provide epilepsy support through a national network of dedicated sites. For this analysis, adults aged 18-65 years with first unprovoked seizure (FUS), newly diagnosed epilepsy (NDE), or drug-resistant epilepsy (DRE) were recruited between February-August 2022. Baseline clinicodemographic data were collected from the participants who completed questionnaires to assess their quality of life (QOLIE-31, EQ-5D-5L), work productivity (Work Productivity and Activity Impairment [WPAI]), and care needs. Univariate analysis and multivariate regression was performed.Results172 participants formed the study cohort (median age 34, interquartile range [IQR]: 26-45), comprising FUS (n = 44), NDE (n = 53), and DRE (n = 75). Mean QOLIE-31 score was 56 (standard deviation [SD] ± 18) and median EQ-5D-5L score was 0.77 (IQR: 0.56-0.92). QOLIE-31 but not EQ-5D-5L scores were significantly lower in the DRE group compared to FUS and NDE groups (p < 0.001). Overall, 64.5% of participants participated in paid work, with fewer DRE (52.0%) compared with FUS (76.7%) and NDE (72.5%) (p < 0.001). Compared to those not in paid employment, those in paid employment had significantly higher quality of life scores (p < 0.001). Almost 5.8% of participants required formal care (median 20 h/week, IQR: 12-55) and 17.7% required informal care (median 16 h/week, IQR: 7-101).SignificanceEpilepsy is associated with a large burden in terms of quality of life, productivity and care needs.Plain language summaryThis is a pilot study from the Australian Epilepsy Project (AEP). It reports health economic data for adults of working age who live with epilepsy. It found that people with focal drug-resistant epilepsy had lower quality of life scores and were less likely to participate in paid employment compared to people with new diagnosis epilepsy. This study provides important local data regarding the burden of epilepsy and will help researchers in the future to measure the impact of the AEP on important personal and societal health economic outcomes.

Project description:AIM:To study health related quality of life (HRQOL) and depressive symptoms in adolescents with chronic fatigue syndrome (CFS) and to investigate in which domains their HRQOL and depressive symptoms differ from those of healthy adolescents. BACKGROUND AND OBJECTIVE:Several symptoms such as disabling fatigue, pain and depressive symptoms affect different life domains of adolescents with CFS. Compared to adolescents with other chronic diseases, young people with CFS are reported to be severely impaired, both physiologically and mentally. Despite this, few have investigated the HRQOL in this group. METHOD:This is a cross-sectional study on HRQOL including 120 adolescents with CFS and 39 healthy controls (HC), between 12 and 18 years. The Pediatric Quality of Life Inventory™, 4.0 (PedsQL) was used to assess HRQOL. The Mood and Feelings Questionnaire assessed depressive symptoms. Data were collected between March 2010 and October 2012 as part of the NorCAPITAL project (Norwegian Study of Chronic Fatigue Syndrome in Adolescents: Pathophysiology and Intervention Trial). Linear and logistic regression models were used in analysis, and all tests were two-sided. RESULTS:Adolescents with CFS reported significantly lower overall HRQOL compared to HCs. When controlling for gender differences, CFS patients scored 44 points lower overall HRQOL on a scale from 0-100 compared to HCs. The domains with the largest differences were interference with physical health (B?=?-59, 95 % CI -54 to -65) and school functioning (B?=?-52, 95 % CI -45 to -58). Both depressive symptoms and being a patient were independently associated with lower levels of HRQOL CONCLUSION: The difference in HRQOL between CFS patients and healthy adolescents was even larger than we expected. The large sample of adolescents with CFS in our study confirms previous findings from smaller studies, and emphasizes that CFS is a seriously disabling condition that has a strong impact on their HRQOL. Even though depressive symptoms were found in the group of patients, they could not statistically explain the poor HRQOL.

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Quality of life in epilepsy: a study of Brazilian adolescents.

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