Development of the Quality of Life in Epilepsy Inventory

Summary: We developed an instrument to measure health-related quality of life (HRQOL) in epilepsy. A 99-item inventory was constructed from the RAND 36-Item Health Survey (generic core), with 9 additional generic items, 48 epilepsy-targeted items, and 6 other items concerning attitudes toward epilepsy and self-esteem. We administered the 99-item inventory to 304 adults with epilepsy at 25 epilepsy centers. Patients and patient-designated proxies completed the inventory and were retested 1–91 days later. A multitrait scaling analysis of these data led to retention of 86 items distributed in 17 multiitem scales (Cronbach's alpha ranged from 0.78 to 0.92). Factor analysis of the 17 multiitem scales yielded four underlying dimensions of health: an epilepsy-targeted dimension, a cognitive factor, mental health, and physical health. Construct validity was supported by significant patient-proxy correlations for all scales and correlations between neuropsychologic tests and self-reported emotional and cognitive function (all p values < 0.05). There were significant negative correlations between the four factor scores derived from the HRQOL scales and neurotoxicity, systemic toxicity, and health care utilization (except for the correlation between mental health factor and health care utilization; all p values < 0.05). Patients who were seizure-free in the preceding year reported better HRQOL for the overall score, three of the four factor scores, and 8 of the 17 scale scores than did patients with a high frequency of seizures. Relative validity analysis showed that the epilepsy-targeted factor and three of its four component scales were more sensitive to categorization of patients by severity of seizure frequency and type than scales tapping physical health, mental health, or cognitive function. These cross-sectional data support the reliability and validity of this measure of HRQOL in epilepsy. The addition of an epilepsy-targeted supplement to the generic core improved the sensitivity to severity of epilepsy. The 86 items included in the field testing were supplemented by three additional items to form the Quality of Life in Epilepsy (QOLIE-89) inventory.     

Risk factors for poor health-related quality of life in adolescents with epilepsy

PURPOSE: To examine potential risk factors for poor health-related quality of life (HRQOL) among adolescents with epilepsy by using the newly developed QOLIE-AD-48. Risk factors were derived from sociodemographic, social, academic, and epilepsy- and health-related domains. METHODS: The QOLIE-AD-48 was administered to 197 English-speaking adolescents (age 11-17 years from >20 sites in the United States and in Canada). The self-report instrument yields an overall HRQOL score and eight subscale scores. Other data were obtained from family interviews, physician reports, and health records. Multiple regression analyses were conducted to study risk factors for impairment of HRQOL. RESULTS: Older adolescents (age 14-17 years), those with more severe epilepsy and more symptoms of neurotoxicity, and those living in households with lower socioeconomic status were more likely to report poor overall HRQOL. Risk factors in the eight HRQOL domains were found as follows: (a) Epilepsy Impact: older age in adolescence, more severe epilepsy and neurotoxicity, more hospitalizations during the past year, and fewer hours of extracurricular activities; (b) Memory and Concentration: longer duration of epilepsy, special education classes, and history of repeating a grade in school; (c) Attitude Toward Illness: older age, female gender, and more severe epilepsy and neurotoxicity; (d) Social Support: younger age, male gender, and fewer hospitalizations in the last year; (e) Stigma: lower socioeconomic status and special-education classes; and (f) Health Perceptions: older age, female gender, and lower socioeconomic status. None of the factors examined was significantly associated with HRQOL in (g) Physical Functioning or (h) School Behavior subscales. CONCLUSIONS: We identified several risk factors for poor HRQOL outcomes in adolescents with epilepsy. Age, increased seizure severity, and neurotoxicity were most consistently associated with poor HRQOL across domains. Older adolescents, independent of epilepsy severity, reported worse overall HRQOL than did their younger counterparts. Older adolescents also were more likely to perceive a greater negative impact on life and general health, and had more negative attitudes toward epilepsy. Adolescent boys and girls may show different sensitivities to various quality-of-life domains.     

Health-related quality of life in adolescents with well-controlled epilepsy

OBJECTIVE: The purpose of the work described in this article was to evaluate the health-related quality of life (HRQOL) of adolescents with well-controlled epilepsy. METHODS: The Quality of Life in Epilepsy Inventory for Adolescents 48 (QOLIE-AD-48) was completed by 71 subjects with uncomplicated epilepsy who had been seizure-free for more than a year. HRQOL was measured in eight domains: Health Perception, Epilepsy Impact, Memory/Concentration, Physical Functioning, Stigma, Social Support, School Behavior, and Attitudes toward Epilepsy. In addition, antiepileptic drug (AED) therapy and concern over seizures recurring were analyzed in relation to HRQOL. RESULTS: The mean HRQOL total scores were 83.9 for boys and 83.06 for girls. The highest scores were observed in the Physical Functioning and School Behavior domains; the lowest in the Attitudes toward Epilepsy domain. Girls reported more positive perceptions in the Stigma and Social Support domains. Greater intake of AEDs and concern over seizures recurring accounted for poorer HRQOL. CONCLUSIONS: Adolescents with favorable seizure control evaluated their HRQOL as satisfactory. However, they perceived their best adjustment to epilepsy to be in the Physical Functioning and School Behavior domains. AED intake and concern over seizures recurring were predictors of HRQOL in this group.     

The Serbian QOLIE-AD-48: translation, cultural adaptation, and preliminary psychometric evaluation

PURPOSE: The goals of the work described in this article were to translate and adapt into Serbian the Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48), and to evaluate the psychometric properties of the translation. METHODS: Translation/backtranslation, cultural adaptation, and pretesting were performed first. For validity, internal consistency, and sensitivity testing, the Serbian version was administered to a sample of 67 adolescents with epilepsy. RESULTS: All subscales (Epilepsy Impact, Memory/Concentration, Attitudes toward Epilepsy, Physical Functioning, Stigma, Social Support, School Behavior, and Health Perceptions) contributed significantly to the summary measure. Mean scores for the subscales ranged from 75.4 to 91.3, and showed a tendency to decrease as illness severity increased. Internal consistency reliability (Cronbach's alpha) was 0.92 for the entire questionnaire. CONCLUSIONS: The QOLIE-AD-48 Serbian version is a valid and reliable instrument for health-related quality-of-life assessment in youths with epilepsy. It can be administered in 15 minutes, and can be used in clinical practice, as well as in quality-of-life research.     

Parental psychopathology and self-rated quality of life in adolescents with epilepsy in Nigeria

This study sought to investigate the relationship between parental psychopathology and health-related quality of life in a group of Nigerian adolescents with epilepsy. The participants were 86 adolescents with epilepsy (50 males, 36 females; mean age 14y 5mo [SD 2y 1mo]; age range 12-18y). There were 54 (62.8%) adolescents with complex partial seizures, six (7.0%) with simple partial seizures, 14 (16.3%) with generalized tonic-clonic seizures, four (4.7%) with absence seizures, and eight (9.2%) with other types of seizure. They completed the Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48). Parents also completed the General Health Questionnaire, Zung's Self-Rating Anxiety Scale, and Zung's Self-Rating Depressive Scale as measures of their psychopathology. Factors correlating with poor overall quality of life in the adolescents include longer duration of illness, large number of antiepileptic drugs, more severe medication toxicity, and psychopathology in the parents. General psychopathology in parents is significantly associated with QOLIE-AD-48 subscales of Epilepsy Impact (r=0.527, p<0.001), Attitude (r=0.214, p=0.047), Physical Function (r=0.417, p<0.001), Stigma (r=0.305, p=0.004), Social Support (r=0.365, p=0.001), and School Behaviour (r=0.220, p=0.042). There is a possibility of a cross-cultural difference on the effect of epilepsy on the quality of life of adolescents. Psychopathology in parents is significantly associated with poorer quality of life of these adolescents. Physicians should consider this, therefore, when planning intervention strategies in improving the quality of life in adolescents with epilepsy.     

Relationships between seizure severity and health-related quality of life in refractory localization-related epilepsy

PURPOSE: To evaluate relationships between self-report measures of seizure severity and health-related quality of life (HRQOL) in people with refractory localization-related epilepsy. METHODS: A sample of 340 adults enrolled in a seven-center, prospective study of resective epilepsy surgery completed baseline questionnaires that included the Quality of Life in Epilepsy (QOLIE)-89 and a seven-item adaptation of the National Hospital Seizure Severity Scale. Associations between QOLIE-89 summary measures and both the total seizure severity scale score and individual seizure severity items were assessed, after adjustment for seizure frequency. RESULTS: The seizure severity measure had adequate scale score variability and reliability in this sample. Correlations between individual items in the scale did not exceed 0. 43. Product-moment partial correlations between the seizure severity scale and QOLIE-89 summary measures ranged from -0.17 to -0.29 (all p values <0.01). Of the seven seizure severity items, the average time before individuals perceived they were "really back to normal" after their seizures was broadly related to all domains of HRQOL (r values ranged from -0.16 to -0.30; p values <0.01). Severity of injury during seizures was the only other item having more than minimal associations with HRQOL, and it was selectively related to the physical health measure. Higher frequency of falls during seizures was modestly related to less employment. CONCLUSIONS: This seizure severity measure assesses constructs that are generally distinct from HRQOL, except for moderate and broad associations between HRQOL and patient's perceptions of the average duration of recovery time after seizures. Recovery time may potentially be a useful clinical indicator of seizure severity that reflects meaningful impairment of HRQOL in adults with frequent seizures.     

Health-related quality of life outcome in medically refractory epilepsy treated with anterior temporal lobectomy

PURPOSE: A prospective study to investigate health-related quality of life (HRQOL) outcome in patients with temporal lobe epilepsy treated with anterior temporal lobectomy (ATL). METHODS: The majority of the patients with medically refractory focal epilepsy had Quality of Life in Epilepsy-89 (QOLIE-89) assessment at the time of prolonged video/EEG monitoring as part of their presurgical evaluation. Thirty-seven patients who were not treated surgically constituted the control group, and 53 patients who underwent ATL made up the surgery group. Both control and surgery groups had HRQOL assessment repeated at approximately 1-and 2-year intervals. Repeated measures analysis of variance (ANOVA) was used to test for differences between the two groups. RESULTS: For the overall score and almost every scale, the surgery group had a higher baseline mean than the control group. Because of this baseline difference, change scores were used in further analysis. The overall score and 10 of 17 scales in QOLIE-89 showed significant HRQOL improvement after ATL, and the improvement was significant relative to score changes of the nonsurgical comparison group. Scores improved in overall QOL, emotional well-being, attention/concentration, language, social isolation, health perception, role limitations-physical, work/drive/social, health discouragement, and seizure worry. For the first five scales, there was group-time interaction; the improvement was significantly more on the 2-year than on the 1-year follow-up. When the surgery patients were divided into four categories (class IA-, completely seizure free; class IA+, seizure free with aura; class II, rare seizures; class III, worthwhile improvement in seizure control; and class IV, no improvement), the improved HRQOL in the surgery group was almost entirely contributed by the class IA- outcome patients who were totally seizure free. The class IA+ patients with continuing aurae and class II/III/IV patients had no significant improvement in their overall HRQOL scores at 1-or 2-year follow-up. CONCLUSIONS: Overall score and 10 of the 17 scales of QOLIE-89 significantly improved in patients with medically refractory temporal lobe epilepsy after ATL. For some scales, there was delay in the improvement to manifest. The HRQOL improvement was related to achieving an entirely seizure-free status (i.e., no seizures or aurae postoperatively).     

Seizure recency and quality of life in adolescents with childhood-onset epilepsy

Health-related quality of life (HRQOL) is associated with seizure recency among adults with epilepsy. In a prospective, community-based study of long-term outcomes of childhood-onset epilepsy, we evaluated whether worse HRQOL is associated with more recent seizures among children and adolescents with epilepsy. We used the Child Health Questionnaire (CHQ), a generic measure with child and parent-proxy versions, to measure HRQOL. Among 277 children with epilepsy (CWE) assessed 9 years after diagnosis, parent-proxy reported but not child self-reported HRQOL was significantly worse for those having seizures in the prior year than for those who were seizure free ≥1 year across the majority of scales. There were no differences between CWE in remission for 1-5 years and those seizure free ≥5 years for child and parent-proxy reported HRQOL with the exception of the parent Emotional Impact scale, suggesting that HRQOL differences related to seizure recency level off after the initial year of remission.     

A survey of quality of life in adolescents with epilepsy in Iran

BackgroundPsychosocial problems seem to be common in epilepsy, and they could negatively affect the social affairs and networking of adolescents with epilepsy. They could cause decreased self-esteem and social performance, leading to isolation and civil discrimination. This study was performed to assess the quality of life (QOL) of a group of adolescents with epilepsy in Iran.MethodsAn analytic cross-sectional study was performed in 197 young Iranian adolescents with epilepsy. To measure the QOL of these cases, the Persian version of the QOL in Epilepsy Inventory for Adolescents 48 (QOLIE-AD-48) scale was used.ResultsThe mean total score of the scale was 61.5 ± 10.4. The highest mean was in the school behavior domain (83.85 ± 12.27), while the lowest mean was in the domain of attitudes toward epilepsy (22.45 ± 15.78). There was a significant correlation between QOL and age, number of drugs taken, and frequency of seizures per year. Sixty-six percent of the adolescents with epilepsy had never talked to their friends or teachers about their disease.ConclusionThis study revealed an unsatisfactory state of the QOL of adolescents with epilepsy in our population in comparison with other studies. This indicates the need for greater concern about the psychological status and risk factors for the QOL of adolescents with epilepsy in Iran.     

Procedure for Developing a Quality-of-Life Measure for Epilepsy Surgery Patients

Summary: In 1990, the NIH Consensus Conference Panel on epilepsy surgery called for the development and use of reliable and valid health-related quality-of-life (HRQOL) measures in epilepsy surgery studies. A HRQOL measure for epilepsy surgery patients has been developed and evaluated. The procedure, which could also be used to develop HRQOL measures for other neurological diseases, entails the following steps: (a) specify desired characteristics of the measure; (b) identify relevant HRQOL areas by reviewing the literature; (c) assemble generic core items and disease-specific supplementary items; (d) pilot test and revise the measure; (e) administer revised measure items to a large sample of epilepsy surgery patients; (f) perform item analysis to evaluate hypothesized item placement within scales; and (g) assess the reliability and validity of the scales. The product of this process, the Epilepsy Surgery Inventory (ESI)-55, is a self-report measure of 11 dimensions of HRQOL. It is brief, comprehensive, and reliable; preliminary evidence supports its validity.