A time-limited residential unit for young adults with epilepsy and mild cognitive impairment: Results of a prospective pre–post-study
Article Outline
- Summary
- 1. Introduction
- 2. Materials and methods
- 3. Results
- 4. Discussion
- 5. Conclusions
- References
- Copyright
Summary
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.
Keywords: Epilepsy, Mild cognitive impairment, Rehabilitation outcome, Quality of life, Activities of daily living, Psychiatric disorders
1. Introduction
Requests for residential living in the Bethel Institute, Germany, have shown that some young people with epilepsy and additional disabilities have severe problems with community integration or inclusion. Typically they suffer from difficult-to-treat epilepsies and additional cognitive and psychosocial impairments, but have better abilities and skills than those with severe or moderate learning disabilities. While they have routinely failed when placed on standard rehabilitation programs, there is no clear indication for a 24
h staffed environment for an unlimited time.
It remains unclear whether this “epilepsy plus” group can benefit from a more targeted rehabilitation program. The so-called Wohnheimverbund Junge Erwachsene (WJE=unit for young adults) of the department for people with disabilities in Bethel has focused on this subgroup for several years. Since the late 1990s standardized self-rating scales were presented pre and post the WJE intervention as an opportunity to assess the impact of rehabilitation.
This study aimed to detect effects of WJE rehabilitation (a) with a focus on living conditions after leaving the unit (=further residential living versus more independent living), and (b) considering seizure status as a core parameter of health status with the potential to influence outcome of self-ratings. Four questions were asked:
2. Materials and methods
2.1. The time-limited rehabilitation unit WJE: structure and interventions
The WJE provides time-limited residential living for young adults with epilepsy aged about 18–35 years from all parts of Germany. Forty residential places are currently available, funded by the German social welfare system for approximately 3 years per resident. The following general targets are aimed at in the WJE: a maximum of independent living, an occupation suitable to the individual capacity and an optimal antiepileptic therapy, as well as resident compliance with antiepileptic treatment. These targets should be reached by the organizational structure of the WJE accommodation, the professional assistance of social workers in all aspects of daily living and support by professional services. Table 1 gives an overview of the WJE framework as well as both obligatory and optional interventions1 that can be altogether characterized as comprehensive care. Social workers assist the residents in their daily activities in order to learn to live as independently as possible. Members of the professional services participate in regular round table discussions together with each resident to plan interventions. Antiepileptic treatment provided by medical service staff of the Bethel Institute is obligatory during WJE rehabilitation.
Table 1. Potentially effective factors in the WJE.
| Structured framework |
| Many different forms of living (e.g. group home or apartment in the city) |
| Supplementary services in the Bethel Institutea: |
| Sheltered workshops providing different levels of occupational opportunities |
| Therapeutic and creative offerings (e.g. recreational centre, workshops for movement, music, therapeutic horse riding, theatre and art) |
| Supportive measures in the residential unit |
| Creation of a scheduled structure in consideration of the individual needs associated with epilepsy |
| Personal support by social workers |
| Social learning by living with peers having epilepsy and sharing common experiences |
| Regular round table discussions to plan and evaluate residents’ development |
| Training practical skills for day-to-day life |
| Job trials (regularly in sheltered workshops) |
| Additional professional servicesa |
| Medical service: neurological–psychiatric treatment for all residents |
| Psychosocial service: consultations from/among social workers and counsellors, individual psychosocial counselling and psychotherapy for residents if required |
| Social service: advice on legal issues, on living and support opportunities following the WJE, occupational and vocational counselling |
| Pastoral consultation: religious services and guidance available to residents |
aSupplementary services and professional services are not exclusively related to the WJE. |
About 6 months before discharge from the WJE the personal support worker comes to an agreement with the client about assistance needs following discharge. Preparations focus on the central question of housing needs: continued residential support, more independent living with supported housing, or even without professional assistance. Experience of the social workers is crucial, and the central criterion for their decision is the independence and responsibility residents have demonstrated in their daily activities. Professional services have to comment on these decisions and may assist social workers and residents if there are doubts, e.g. with respect to risks of injuries due to seizures when living alone.
2.2. Sample
Questionnaires were answered by 56 individuals after admission and upon discharge from the WJE. Due to missing data on seizure status only data of 52 persons could be analyzed. With these data 77.6% of the WJE population (n=67) were registered who started residential living in the WJE between June 1999 and January 2005 and left the WJE until summer 2008. The sample consisted of 20 women (38.5%) and 32 men (61.5%). Eleven persons (16.4%) did not answer the questionnaires at T2 for different reasons: four of them had moved back to their parents, disappointed from WJE rehabilitation, two persons had died during residential living due to sudden unexpected death in epilepsy, five persons refused to participate and moved to longer lasting residential care.
The WJE residents were on average 25 years old at admission (range=17–36 years). Among them were 36 persons with a regular school certification (69.2%). Some had reached this certification in special schools for people with physical or intellectual disabilities. Only 12 persons had finished a vocational training of 3 years after regular school (23.1%) which is traditionally the basis qualification for the open job market in Germany. Prior to WJE admission 36 residents (69.2%) lived together with their parents or relatives: twenty-five of them had no work or occupation, 11 of them worked in sheltered workshops or visited pre-courses in vocational training units. Thirteen WJE residents were already supported by residential services or were failing boarding-units for vocational trainings before admission (25.0%). Three WJE residents lived with supported housing (5.8%) and had no work. At admission the WJE files indicated additional medical diagnoses among 77% of the sample (without consideration of epilepsy and cognitive impairment): mostly psychiatric disorders were recorded with 42%, but these hints – as life-time records – did not necessarily refer to active and persisting psychiatric diseases. Nevertheless, data altogether indicated high co-morbidity as “normality” among the WJE residents.
The mean age of epilepsy onset was 9 years (range=0–26 years) and the mean duration of epilepsy was 16 years (range=4–35 years). On average 2.1 different epileptic seizure types were recorded (range=1–4): most persons had primarily or secondarily generalized tonic–clonic seizures (67.3%), followed by psychomotor seizures (59.6%). Only five persons (9.6%) did not get seizures during the past 6 months before WJE admission. Nine persons (17.3%) had been observed with psychogenic non-epileptic seizures in addition to epilepsy. At admission an average of 1.9 antiepileptic drugs (AEDs) were prescribed (range=1–4) and eight persons (15.4%) were additionally treated with psychotropic agents.
2.3. Material
A battery of self-rating scales based on the PESOS questionnaire2, 3 was collected to grasp the central WJE targets such as epilepsy, daily living, occupation and the psychosocial condition. Supplementary data on psychiatric symptoms were collected with two established and psychometrically proven clinical self-rating scales. All questionnaires had to be answered on 4-point or 5-point scales (e.g. from “not at all” to “very much”), if not otherwise specified. Data of questionnaires were completed by data from WJE files on health status, on work and living conditions.
2.3.1. Epilepsy evaluationThe PESOS questionnaire (performance, socio-demographic aspects, subjective evaluation/estimation) was developed and psychometrically evaluated in the epilepsy centre Bethel as an outcome measure for people with epilepsy.2 Epilepsy related problems are captured with four PESOS subscales. They refer to the concept of (epilepsy-specific) HRQOL.4 With regard to the specific living conditions in residential care some items of these subscales were eliminated. The resulting scales had already proved their utility for use among patients in residential care:5 “restrictions in daily life due to epilepsy” (11 items), “emotional adaptation to epilepsy” (6 items), “(felt) stigma” (3 items) and “epilepsy related fear” (12 items).
2.3.2. Activities of daily living (ADL) and satisfaction with daily lifeA scale on the frequency of activities of daily living (ADL) was constructed based on the PESOS subscales on “performance in daily life”.2 The new scale asks for the frequency of ADL and comprises 21 items on self-sufficiency, mobility, leisure and social activity. A scale on satisfaction with daily life was added. Eight items were chosen for this scale, related to the conditions of residential living (=satisfaction with personal independence, home, neighbours, friends, relationship to relatives, social support in case of personal problems, work). The scale resembles other life satisfaction questionnaires that have, since Cummins, proved their utility in people with intellectual disabilities when certain cognitive basic requirements are met.6
2.3.3. Problems with occupationA scale on problems at work was developed based on the PESOS subscale “subjective evaluation of the employment situation”.2 The scale consists of 10 items dealing with aspects of achievement and social integration.6
2.3.4. Psychiatric problems and overall QOLThe depression scale D-S′ by von Zerssen7 covers primarily emotional and motivational depression aspects with 16 items. The German version of the Symptom Checklist 90-R (SCL-90-R) by Derogatis8 aims at detecting 90 symptoms of general psychopathology. The General Severity Index (GSI) was calculated as a composite score to measure general distress.
A single item on overall QOL that has frequently been used in social scientific studies9 was added to the clinical self-rating scales. It has to be rated on an 11-point scale (0=“It could not be worse”, 10=“It could not be better”).
2.4. Data collection and experiences
Questionnaires were administered to the WJE residents in face-to-face interviews, approximately 4 weeks after admission (T1) – in order not to evaluate immediate reactions to the new environment and in order not to specifically address problems before admission – and a few days before discharge (T2). The interviews were conducted by a member of the Psychological Service of the Bethel Institute. All items were read aloud to each individual. The presentation of scales in face-to-face interviews seemed necessary in order to motivate individuals with a limited attention span, reading difficulties or general motivational problems. The residents were able to answer most of the items without comprehension difficulties. For some individuals more abstract words caused problems. In these cases concrete examples were chosen to make a phrase comprehensible. A general relationship between the administration of questionnaires and response tendencies has not yet been demonstrated,10 and the presentation of scales in face-to-face interviews is relatively widely used to gain data of special subgroups, even among patients with epilepsy.11, 12
2.5. Data analysis
SPSS for windows (Version 11.5) was used for data analysis. Raw scores of the PESOS and the additional self-constructed scales were transferred to scores between 0 and 100. D-S′ raw scores as well as SCL-90-R raw scores were converted to female and male T-scores based on the data from the German normative samples. Two-tailed parametric statistical tests were suggested to be appropriate as Kolmogorov–Smirnov tests on normal distribution revealed no striking deviations (p<.05) of scales’ scores. Cronbach's α-scores were measured at T1 as indicators of scales’ reliability. For this comprehensive study the overall scores of all scales were used as the internal consistencies were sufficient for most of the scales (α-scores between .66 on ADL and .96 on SCL-90-R). Only the scale on satisfaction with daily life lacked internal consistency (α=.49).
Possible differences between groups on categorical health or socio-demographic variables were analyzed using Chi2-tests or Fisher's exact tests if expected frequencies were less than 5. The Wilcoxon test was used to analyze changes of seizure frequency. Possible changes on self-ratings between admission and discharge were detected by multivariate analysis of variance with repeated measurement (MANOVA). Multivariate analysis of variance (MANOVA) was computed to find out if difference scores of self-rating scales (T1 score minus T2 score) reflected changes of seizure frequency (impairment, no change, improvement). Multivariate analysis of (co)variance with repeated measurement (MANCOVA) was performed to compare groups with different assistance needs following WJE (residential care versus supported housing). This analysis was controlled for the influence of seizure frequency at T1 and at T2. Both groups were additionally compared at T1 by t-tests for independent samples. Finally, effect sizes were calculated to gain hints on the degree of possible changes. Small effects (>.20), moderate effects (>.50) and high effects (>.80) are differentiated.13
3. Results
3.1. Overall effects of rehabilitation
The pre–post-comparison of six categories on seizure frequency during the past 6 months (no seizures, one to two seizures, three to five seizures, monthly seizures, weekly seizures, daily seizures) revealed eight residents (15.4%) with an impairment at T2, 25 persons (48.1%) with an improvement at T2 and 19 persons (36.5%) with no changes between T1 and T2 (change=any other category at T1 than at T2). Seizure frequency was significantly reduced (z=2.978, p=.003): at discharge of the WJE 13 individuals (25.0%) were free of seizures during (at least) the past 6 months in comparison to only five individuals (9.6%) at admission to the WJE. At T1 three persons suffered from daily epileptic seizures, at T2 no one had daily seizures anymore.
Changes of seizure frequency correspond to AED treatment interventions: AEDs were completely changed among 15 individuals, changed under keeping at least one AED constant among 15 individuals, and changed only with respect to dosages among 14 individuals. The same AED treatment at admission and at discharge was documented among only eight individuals. The mean number of 1.9 AEDs remained constant at both times.
Nearly all WJE residents were occupied in sheltered workshops of the Bethel Institute and were assigned to further occupation in sheltered workshops at WJE discharge: forty-eight persons (92.3%) worked there at T1, 49 persons (94.2%) at T2. Only one person completed a vocational training on the open job market, three persons at T1 and two persons at T2 were not occupied. A transfer to the regular job market was only exceptionally possible for the WJE residents due to incongruity of their capacities and the current market demands in Germany. When WJE residents moved to another local area after discharge they were regularly occupied in a sheltered workshop in that region.
After WJE rehabilitation 23 persons (44.2%) remained in longer lasting residential care and had to move to other facilities than the WJE. Twenty-nine persons (55.8%) moved to living conditions with less or no professional assistance: most of them moved to supported housing, a minority of seven persons (13.5%) settled with a partner or moved to an apartment with further assistance by their relatives.
The MANOVA with repeated measurement demonstrated a significant time effect for the 10 self-rating scales (see Table 2). Univariate analyses detected improvements on the PESOS scales restrictions due to epilepsy, adaptation to epilepsy and epilepsy related fear, on the ADL scale and on the QOL item. Nevertheless, effect sizes of these improvements were only small. No changes were found on stigma, problems at work, satisfaction with daily life and psychiatric symptoms.
Table 2. Comparison of self-ratings at WJE admission and at discharge.
| n=52 | Time | SES | SMR | MANOVA: Time | |
|---|---|---|---|---|---|
| F=2.547 p=.017 | |||||
| PESOS (HRQOL): | |||||
| Restrictions due to epilepsy | T1 | 23.2±20.9 | F=16.925 | ||
| T2 | 13.6±17.2 | 0.46 | 0.39 | p=.000 | |
| Stigma | T1 | 29.0±28.8 | F=2.109 | ||
| T2 | 23.1±22.1 | 0.21 | 0.23 | p=.153 | |
| Adaptation to epilepsy | T1 | 29.9±21.7 | F=7.353 | ||
| T2 | 24.6±21.2 | 0.24 | 0.33 | p=.009 | |
| Epilepsy related fear | T1 | 26.6±21.5 | F=4.855 | ||
| T2 | 20.8±17.4 | 0.27 | 0.32 | p=.032 | |
| ADL scale | T1 | 65.5±10.2 | F=4.144 | ||
| T2 | 68.5±10.8 | 0.29 | 0.24 | p=.047 | |
| Problems at work | T1 | 15.8±15.5 | F=0.124 | ||
| T2 | 16.8±16.0 | −0.07 | −0.05 | p=.727 | |
| Satisfaction with daily life | T1 | 78.0±11.3 | F=0.370 | ||
| T2 | 76.7±13.5 | −0.12 | −0.09 | p=.546 | |
| QOL (1 item) | T1 | 6.3±2.3 | F=6.905 | ||
| T2 | 7.2±2.4 | 0.39 | 0.32 | p=.011 | |
| Depression scale D-S′ (T-score) | T1 | 53.7±11.7 | F=0.144 | ||
| T2 | 54.6±9.6 | −0.08 | −0.08 | p=.706 | |
| SCL-90-R summary score GSI (T-score) | T1 | 52.7±15.6 | F=0.326 | ||
| T2 | 52.1±15.4 | 0.04 | 0.05 | p=.570 | |
3.2. Relations between changes of seizure frequency and self-rating scales
The MANOVA with difference scores on self-ratings as dependent variables revealed no significant main effect for changes (improvement, no change, impairment) of seizure frequency (F=1.466, p=.118) whereas univariate tests demonstrated four differences, on the PESOS subscales restrictions due to epilepsy (F=3.585, p=.035) and epilepsy related fear (F=3.365, p=.043), on the scale on problems at work (F=3.378, p=.042) and the depression scale D-S′ (F=3.332, p=.044). Highest improvements on these scales were accompanied by reductions of seizure frequency and impairments by higher seizure frequency (see Fig. 1).
Fig. 1.
Changes of self-ratings (=difference scores) in relation to changes of seizure frequency.
Note. Difference scores
<0 indicate more self-rated problems or symptoms at T2.
3.3. Comparison of changes among residents assigned to supported housing versus longer residential care
For statistical analysis, the small group of residents with no further professional assistance was subsumed to the category “supported housing”. The MANCOVA with repeated measurement demonstrated a significant time effect and a significant time×group effect, controlling for the influence of seizure frequency (see Table 3). Univariate analyses indicate that the groups differed with regard to changes of six self-rating scores. Improvements of residents moving to supported housing, with moderate to high effect sizes, were detected on the PESOS subscales restrictions due to epilepsy and epilepsy related fear, on the ADL scale, and on the QOL item. Contrary, the group moving to other residential facilities revealed no changes or even impairments on these scores. Scores of the clinical scales also differed between the two groups with slight improvements among the group moving to supported housing in contrast to moderate impairments among the group moving to longer lasting residential care.
Table 3. Self-rating data of individuals with different living conditions following WJE rehabilitation at admission and at discharge.
| Time | Supported housing (n=29) | SES | SMR | Residential care (n=23) | SES | SMR | MANCOVA | |||
|---|---|---|---|---|---|---|---|---|---|---|
| Time | Time×group | Group | ||||||||
| F=3.545 p=.002 | F=2.098 p=.049 | F=1.349 p=.241 | ||||||||
| PESOS (HRQOL): | ||||||||||
| Restrictions due to epilepsy | T1 | 23.7±21.9 | 22.7±23.7 | F=0.080 | F=4.508 | F=0.015 | ||||
| T2 | 8.3±10.7 | 0.70 | 0.84 | 20.6±21.1 | 0.09 | 0.03 | p=.778 | p=.039 | p=.903 | |
| Stigma | T1 | 31.1±31.0 | 28.3±27.3 | F=0.221 | F=1.333 | F=2.411 | ||||
| T2 | 22.8±23.6 | 0.27 | 0.35 | 23.9±20.2 | 0.16 | 0.15 | p=.640 | p=.254 | p=.127 | |
| Adaptation to epilepsy | T1 | 25.4±22.5 | 37.0±19.5 | F=0.394 | F=0.251 | F=3.251 | ||||
| T2 | 17.1±20.5 | 0.37 | 0.53 | 34.4±17.7 | 0.13 | 0.14 | p=.533 | p=.619 | p=.078 | |
| Epilepsy related fear | T1 | 27.0±23.3 | 27.9±21.0 | F=0.252 | F=5.213 | F=0.938 | ||||
| T2 | 16.1±14.6 | 0.47 | 0.66 | 27.6±18.7 | 0.01 | 0.02 | p=.618 | p=.027 | p=.338 | |
| ADL scale | T1 | 63.6±10.6 | 68.2±9.1 | F=3.604 | F=8.665 | F=0.007 | ||||
| T2 | 71.6±9.9 | 0.76 | 0.69 | 64.2±10.5 | −0.45 | −0.39 | p=.064 | p=.005 | p=.935 | |
| Problems at work | T1 | 15.2±14.8 | 17.5±16.8 | F=0.728 | F=1.558 | F=1.181 | ||||
| T2 | 11.5±11.1 | 0.25 | 0.29 | 23.5±18.7 | −0.36 | −0.24 | p=.398 | p=.218 | p=.283 | |
| Satisfaction with daily life | T1 | 78.9±12.4 | 77.3±9.7 | F=1.409 | F=1.591 | F=0.696 | ||||
| T2 | 79.6±14.0 | 0.06 | 0.04 | 72.4±11.8 | −0.50 | −0.44 | p=.241 | p=.213 | p=.408 | |
| QOL (1 item) | T1 | 5.8±2.4 | 7.0±2.1 | F=4.895 | F=8.836 | F=1.188 | ||||
| T2 | 7.9±1.8 | 0.86 | 0.83 | 6.3±2.9 | −0.33 | −0.31 | p=.032 | p=.005 | p=.281 | |
| Depression scale D-S′ (T-score) | T1 | 53.7±13.2 | 54.1±9.7 | F=6.661 | F=9.537 | F=0.703 | ||||
| T2 | 50.6±8.6 | 0.24 | 0.27 | 59.7±8.2 | −0.58 | −0.60 | p=.013 | p=.003 | p=.406 | |
| SCL-90-R summary score GSI (T-score) | T1 | 52.1±16.2 | 53.2±14.8 | F=0.003 | F=10.820 | F=1.099 | ||||
| T2 | 45.9±14.4 | 0.38 | 0.54 | 59.8±12.9 | −0.44 | −0.59 | p=.960 | p=.002 | p=.300 | |
Neither group differed (p<.05) with regard to changes of AED treatment or number of AEDs at T1 or at T2. Significantly more persons of the group assigned to supported housing had a better seizure status at T2 (Chi2=10.185, p=.037): twelve of them (41.4%) had no seizures during the past 6 months, compared to only one person (4.4%) in the group assigned to residential care. Nevertheless, five persons of the group assigned to supported housing still had weekly seizures (17.2%) and six of them had monthly seizures (20.7%). The group was not only represented by people with an improvement in seizure control: the seizure frequency of 11 residents in this group did not change and the seizure frequency of two of them even increased. In the group assigned to residential care were six persons with weekly seizures (26.1%) and 10 persons with monthly seizures (43.5%). Furthermore, fewer persons of the group assigned to supported housing were treated with psychotropic drugs (5.8% versus 17.3%) in addition to AEDs at T2 (Chi2=4.476, p=.034).
3.4. Relations of data collected at T1 with living conditions following WJE
Residents that later moved to supported housing had a significantly longer duration of epilepsy (M=19.1 years, SD=8.5, versus M=13.3 years, SD=6.6; t=2.720, p=.009) and had significantly lower scores on the PESOS scale adaptation to epilepsy at T1 (see Table 3), i.e. fewer problems (t=2.166, p=.035). No other group differences (p<.05) could be found at admission: neither socio-demographic variables such as age and sex, school certification, living conditions prior to WJE admission nor other epilepsy variables or self-ratings on QOL parameters and clinical scales differed between the groups.
4. Discussion
The study demonstrated a reduction of seizure frequency and small improvements on self-ratings of HRQOL, QOL and ADL for the whole sample of WJE residents. After differentiating between the groups assigned to residential care versus supported housing following WJE rehabilitation, these improvements were shown to be only attributable to the latter group: more striking improvements with mostly moderate effect sizes could be detected among them. The group assigned to living more independently after WJE rehabilitation also had a better health status at T2. Therefore, persons of this group can be characterized as respondents of the comprehensive WJE rehabilitation.
Additional comparisons revealed that overall effects of the WJE rehabilitation could be slightly overrated from pre–post-data of only 77.6% of the clients: those 15 persons not included due to missing data demonstrated lower ADL scores (t=2.251, p=.042) and higher depression scores (t=2.072, p=.042) at T1, indicating a poorer health status. Their outcome with respect to independent living was even worse, as only four persons among them moved to supported housing. Including these data, 33 of the residents from the WJE population (49.3%) were successful with respect to living without residential support, the other half of 34 residents (50.7%) did not seem to profit.
This WJE outcome with a rate of approximately 50% of respondents may dampen high expectancies. But it has to be considered that the young people with active epilepsy and co-morbidity of this study are, simply speaking, “drop-outs” from preceding health and social rehabilitation interventions in Germany. In view of their failures in earlier lifetime, the outcome with one half of respondents has, in the author's opinion, to be regarded as at least promising.
In addition to overall effects, the study aimed to analyze changes on psychosocial variables considering the effect of seizure frequency as the core health parameter with potential to influence results. Findings suggest that seizure reductions had indeed an influence on psychosocial outcome variables but that they are not obligatory for all improvements, e.g. for improvements on the ADL scale or the QOL item: the analysis of (co)variance controlling for the influence of seizure frequency revealed more positive changes in individuals moving to supported housing on six self-rating scales. Furthermore, difference scores on self-ratings corresponded to changes on seizure frequency in line with other studies that had already demonstrated a relationship between better seizure control and higher epilepsy-related QOL.2, 5, 14 But such differences could only be found on four measures.
What other variables may have an influence on WJE outcome? This question cannot be definitively answered so far. Contrary to the group differences among WJE respondents and non-respondents in changes between T1 and T2, most data gained at T1 did not correlate with living conditions following WJE. Hints (p<.05) on later living conditions without residential care were gained from a longer duration of epilepsy and a better adaptation to epilepsy among this group. Sufficient data on IQ or neuropsychological tests with a potential influence on results were not available for the sample but school certifications as indicators of the degree of cognitive impairment did not differ between the groups. It seems possible that variance of cognitive impairment among WJE residents was too small for striking effects on the rehabilitation outcome. Motivational factors at admission may play a part in explaining results of WJE rehabilitation and living conditions after discharge. Therefore, it seems worthwhile to search for appropriate measures on motivation. In addition to health and personality variables, aspects of psychosocial WJE treatment such as the relationship and interaction of social workers and their clients could be influential.
Results are limited due to a naturalistic study design. A comparison with an appropriate control group of other rehabilitation units was impossible to realize. An extreme critique could place doubt on the WJE program having any effects; arguing that developmental processes over 3 years could, per se, have beneficial effects for one half of people and opposite effects for the other half, just by chance. But this argumentation lacks knowledge of health and psychosocial problem groups. It has been shown that, for instance, co-morbid mental disorders have an on-going impact in patients with chronic somatic diseases,15 unemployment negatively affects psychosocial outcome parameters,16 and affective disorders such as depression tend to persist.17 Thus, the assumption does not appear to be realistic that problems associated with epilepsy in the WJE group could be solved without any rehabilitative interventions. Instead, rehabilitation programs seem a necessary effort to prevent deteriorations of problems.
Another short-coming of the study design refers to the nature of “comprehensive care”, with many interventions occurring simultaneously and the offering of a high number of optional interventions.18, 19 Indeed, effects of separate interventions in the WJE cannot be exactly specified and therefore causal inferences are impossible to draw. It is obvious, for example, to suggest that reduction of seizure frequency during residential living is basically determined by improvements of AED therapy. But seizure frequency could have also been reduced – at least in some cases – due to improvements of compliance based on dialogues between the clients and their epileptologist or their personal support worker or even due to structural interventions such as diminishing daily demands or selecting an appropriate occupation in the sheltered workshop.
5. Conclusions
The rehabilitation program for young people with epilepsy and mild cognitive impairment proved to be effective for approximately half of the residents.
A broader data base seems desirable as a basis for more specific data analyses: subgroups such as persons with scores in the clinical range of self-rating scales on psychiatric symptoms should be investigated as well as possible effects of single interventions on subgroups during WJE rehabilitation.
Moreover, a follow-up evaluation with former WJE residents is useful to prove the stability of effects.
As a current practical implication, thoughts about promoting adaptation to epilepsy in those with especially high scores on this scale at admission seem necessary in order to improve WJE rehabilitation.
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PII: S1059-1311(10)00016-6
doi:10.1016/j.seizure.2010.01.015
© 2010 British Epilepsy Association. Published by Elsevier Inc. All rights reserved.
