Effects of a specialized inpatient treatment program on epilepsy-related impairments of patients with epilepsy and intellectual disability as rated by relatives and professional caregivers.

INTRODUCTION: The aim of the study was to determine the impact of a comprehensive inpatient treatment program for persons with epilepsy and intellectual disability (ID) on the concerns of relatives and caregivers, quality of life (QoL), and global health and clinical aspects, assessed by a questionnaire for relatives and caregivers. METHODS: We performed an open, controlled pre/post study in inpatients with epilepsy and ID or acquired brain damage treated for at least 14 days in a tertiary referral center for epilepsy. Questionnaires were administered to relatives/professional caregivers shortly before admission and 6 months after discharge for the treatment group (TG). The control group (CG) was recruited from the waiting list; questionnaires were answered at the time of application for treatment and 3-6 months later. The questionnaire was the GEOS-43G, the German version of the Glasgow Epilepsy Outcome Scale (GEOS-35), which was extended by eight additional questions from the GEOS-90. Furthermore, QoL, global health, and clinical aspects were assessed using a short questionnaire. Generalized estimation equations (GEEs) were used for statistical analyses. RESULTS: One-hundred and eight subjects were evaluable in the TG, and 90 in the CG. Concerns about seizures, injuries/risks, medical treatment, diagnostic issues, and the GEOS-43G total score decreased significantly in the TG in contrast to the CG. For the TG, improvements were also significant for global QoL, global health, efficacy, tolerability of AEDs, and for seizure frequency. Caregivers reported larger improvements compared to relatives. CONCLUSION: The evaluation of the relatives and caregivers in our study indicates that inpatient treatment in a specialized center with a dedicated multi-professional program led to significant improvements regarding the concerns of relatives or caregivers, and in the QoL and related aspects in persons with epilepsy and ID. This shows that specialized inpatient treatment may be helpful for persons with epilepsy and ID.

Rehabilitation for young adults with epilepsy and mild intellectual disabilities: results of a prospective study with repeated measurements.

PURPOSE: A residential rehabilitation program of the Bethel Institute in Germany for approximately three years is offered to young adults with epilepsy and mild intellectual disabilities. Participants aim at epilepsy improvements and want to gain more independence. The purpose of this study was to investigate effects of the program and their stability over the course of time. METHOD: Ninety-seven clients completed the program between 1999 and 2011. Data with repeated measurements (T1=four weeks after admission, T2=discharge, T3=at least two years after discharge) were only available for 51 of them. Outcome variables were seizure frequency, carer-ratings on their clients' success, assistance needs after the program (supported housing vs. long-term residential care) and client-ratings on activities of daily living, problems at work, on health-related and on global quality of life (QOL), on life satisfaction and on depression and psychological distress. RESULTS: Seizure frequency was significantly reduced, more than half of the clients moved to supported housing. Clients reported improvements in activities of daily living and some aspects of their QOL. These improvements remained constant over at least two years. Baseline data scarcely correlated with outcome measures. Analyses of subgroups demonstrated that changes of client-ratings correspond to changes of external parameters such as seizure frequency and professional assistance. CONCLUSION: Improvements with regard to more independent living, a better seizure control and more favorable self-ratings remained stable over the following years. From a social-welfare point of view, it is especially important that about half of the clients moved to supported housing after the program.

[Results of rehabilitation in a residential unit for young adults with epilepsy and mild intellectual disabilities]. / Ergebnisse der Rehabilitation in einer stationären Einrichtung der Behindertenhilfe für junge Erwachsene mit Epilepsie und leichten intellektuellen Beeinträchtigungen.

OBJECTIVE: A residential rehabilitation program of the Bethel Institute in Germany for approximately 3 years is addressed to young adults with epilepsy and mild intellectual disabilities. This study aimed to document results of the program and to analyze relations between baseline data and results of rehabilitation as well as relations between different outcome measures with a focus on epilepsy. METHODS: Data of 85 clients with 2 measurements (T1=4 weeks after admission, T2=dis-charge) were available. The following variables were analyzed: seizure frequency, carer-ratings on epilepsy, on daily-life independence and on occupational and psychological status of their clients, assistance needs following the program (residential care vs. supported housing), and client-ratings on satisfaction with the program. RESULTS: Seizure frequency was significantly (p<0.05) reduced, more than half of the clients were assigned for supported housing. Proportions of clients with improvements according to carer-ratings varied between 44.7% with regard to epilepsy and 67.1% with regard to occupational status. Approximately 66% of the clients were satisfied with the program. T1-data only scarcely influenced later assistance needs. Outcome measures correlated moderately with each other. CONCLUSION: Depending on the outcome measure, at best two thirds of the clients are rehabilitation responders. Considering variance of seizure frequency at T1 and only moderate correlations between outcome measures, reductions of seizure frequency during the program are desirable but not always necessary for improvements of other outcome measures.

Predictors of health-related and global quality of life among young adults with difficult-to-treat epilepsy and mild intellectual disability.

OBJECTIVE: This study evaluated predictors of health-related quality of life (HRQOL) and global quality of life (QOL) among young adults with difficult-to-treat epilepsy and mild intellectual disability. METHODS: One hundred and forty-two persons with epilepsy and cognitive problems were routinely screened on HRQOL, global QOL, and psychological distress four weeks after admission to a time-limited residential rehabilitation unit. The PESOS scales (PE = PErformance, SO = SOciodemographic aspects, S = Subjective evaluation/estimation) on epilepsy-specific problems were administered as measures of HRQOL; a questionnaire on life satisfaction and an item on overall QOL were used as measures of global QOL. Psychological distress was captured with the Symptom Checklist 90-R. Further data were gained from medical files. Quality-of- life predictors were identified using univariate methods and stepwise regression analyses. RESULTS: Psychological distress was the only predictor of all HRQOL and global QOL parameters. Seizure frequency was a predictor of most HRQOL variables. Other epilepsy variables affected only some HRQOL variables but were not associated with global QOL. Health-related quality of life did not seem to be strongly impaired. Only low correlations were found between HRQOL and global QOL. CONCLUSION: The notion of psychological distress as the most influential predictor of all QOL measures is in line with most findings on QOL in epilepsy. Former observations of weak associations between HRQOL and global QOL among patients with epilepsy and mild intellectual disability are supported. Thus, interventions to reduce psychological distress, besides epilepsy treatment, seem to be of great importance to improve QOL.

A time-limited residential unit for young adults with epilepsy and mild cognitive impairment: results of a prospective pre-post-study.

INTRODUCTION: This study examined the effects of a time-limited residential unit for young adults with epilepsy and mild cognitive impairment in a German epilepsy centre. Residents spend approximately 3 years in this unit to gain more independence and better seizure control. METHODS: Fifty-two individuals were interviewed about 4 weeks after admission (T1) and again at discharge (T2) using the PESOS scales on health-related quality of life (HRQOL), the depression scale D-S', the Symptom Checklist 90-R, an item on overall quality of life (QOL), and scales on activities of daily living (ADL), life satisfaction and work related problems. Changes in these self-rating scales were computed and related to changes in seizure frequency and to later support needs following rehabilitation in the residential unit. RESULTS: The frequency of epileptic seizures had declined at the time of discharge. Twenty-nine individuals could move to supported housing, 23 moved to long-term residential units. Some self-rating scales reflected changes of seizure frequency, but a main effect was not detected. Residents assigned to supported housing and those assigned to longer residential care differed significantly in changes of HRQOL, overall QOL, ADL and clinical ratings, controlling for effects of seizure status. Improvements were only found in residents moving to supported housing. However, both groups could not be selected by available information at T1. DISCUSSION: The time-limited residential unit yields positive effects in about half of their clients with epilepsy and mild cognitive impairment. Effects have to be related to a group with well-known difficulties in many aspects of living before admission. Improvements of subjective health status do not seem to be solely attributable to reduction of seizure frequency. Other determining factors for good or poor rehabilitation outcome remain to be identified.

Factors associated with health-related quality of life, anxiety and depression among young adults with epilepsy and mild cognitive impairments in short-term residential care.

INTRODUCTION: This study examined associations of health-related quality of life (HRQOL), anxiety, and depression with medical and psychosocial variables. Participants were young adults with epilepsy and additional mild cognitive impairments in short-term residential care of the Bethel Institute, Germany. METHODS: Thirty-six individuals were interviewed using the Quality of Life in Epilepsy Inventory 31 (QOLIE-31), the Hospital Anxiety and Depression Scale (HADS) and the neuroticism scale of the Neo-Five-Factor Inventory (NEO-FFI). Medical as well as socio-demographic data were assembled from client files. RESULTS: Regression analyses revealed neuroticism as the strongest predictor of HRQOL, anxiety and depression. The only variables that additionally explained a substantial proportion of variance counting for 6-10% in the three criteria were age at epilepsy onset and sex: epilepsy onset after the age of 10 years was associated with lower HRQOL and higher anxiety, men suffered from more depression than women. DISCUSSION: Neuroticism as a personality disposition seems to be most influential on HRQOL and anxiety in people with epilepsy and mild cognitive impairment. The impact of sex and age at epilepsy onset on HRQOL, anxiety and depression of this epilepsy subpopulation should be further clarified.

Self-proxy agreement and correlates of health-related quality of life in young adults with epilepsy and mild intellectual disabilities.

This study investigated health-related quality of life (HRQOL) in young adults with epilepsy and intellectual disabilities. First, agreement between self-reports and proxy reports of HRQOL was examined. Second, medical and psychological contributions to HRQOL were explored. Thirty-six patients were interviewed using the Quality of Life in Epilepsy inventory (QOLIE-31), the Hospital Anxiety and Depression Scale, and the Neuroticism and Extraversion scales of the NEO Five-Factor Inventory. Medical data were taken from files. Professional caregivers completed rephrased QOLIE-31-questionnaires. The perspectives on HRQOL differed systematically: Caregivers underrated their clients' HRQOL on average. Few correlations with medical characteristics emerged, whereas all psychological variables were strongly related to HRQOL. Neuroticism, Age at Disability Onset, and their interaction explained 71% of the HRQOL variance. Results indicate that proxy reports do not provide valid substitutes for most of the self-reported HRQOL subscales. Psychological treatment of negative affectivity and after critical life events in adolescence may improve HRQOL in young adults with epilepsy and mild intellectual disabilities.

Quality of life among people with epilepsy and mild intellectual disabilities in residential care.

This study examined quality-of-life (QOL) evaluations among people with epilepsy and mild intellectual disabilities in residential care to determine their covariation and potential determinants. Participants were 111 clients of the Bethel Institute, Bielefeld, Germany. They completed questionnaires on their overall QOL and life satisfaction, the PESOS scales on epilepsy-related QOL, the Brief Symptom Inventory (BSI), and scales on activities of daily life and work-related problems in face-to-face-interviews. QOL evaluations differed in the various domains and tended to be better on more concrete items. Correlations of generic QOL parameters with scales on epilepsy-related QOL were only weak. BSI scores reflecting the current emotional state were identified as the most influential predictors of all QOL measures. The weak relationship between non-health-related parameters of subjective QOL and epilepsy-related QOL requires further investigation and theoretical explanation, whereas the influence of negative affect on different QOL dimensions is in line with previous QOL findings.

The Brief Symptom Inventory (BSI) as a screening tool for psychological disorders in patients with epilepsy and mild intellectual disabilities in residential care.

This study examines the usefulness of the Brief Symptom Inventory (BSI) as a screening tool for psychological disorders in patients with epilepsy and mild intellectual disabilities. Participants were 91 residents of the Bethel Institute, Bielefeld, Germany. Cronbach's alpha was revealed to be sufficient for the composite score Global Severity Index (GSI) (0.95) and for most of the subscales (0.64-0.80). Compared with normative data, residents with epilepsy scored slightly higher on all BSI scales. Only the subscale Paranoid Ideation was especially elevated, a finding of heuristic value. Subgroups of residents with past psychiatric morbidity, on current psychotropic medication, with poor seizure control, and more epilepsy-related problems either tended toward or demonstrated higher GSI scores. These results indicate the validity of the questionnaire with the GSI as a global indicator of possible psychopathology. BSI subscales seemed to reflect predominantly the amount of emotional distress, but their potential to identify specific clinical syndromes remained unclear.