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The efficacy of a short-term multidisciplinary epilepsy program
Epilepsy & Behavior 86 (2018) 98–101
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
The efficacy of a short-term multidisciplinary epilepsy program Frank Seyer ⁎, Juri-Alexander Witt, Julia Taube, Christoph Helmstaedter Department of Epileptology, University of Bonn Medical Center, Bonn, Germany
a r t i c l e
i n f o
Article history: Received 31 January 2018 Revised 11 June 2018 Accepted 11 June 2018 Available online 17 July 2018 Keywords: Pharmacoresistant epilepsy Treatment efficacy Multidisciplinary team Psychosocial assessment Short-term intervention
a b s t r a c t Rationale: Epilepsy is more than having seizures. Therefore, specialized epilepsy centers in Germany offer multidisciplinary programs for inpatients with pharmacoresistant epilepsies. This monocentric study evaluated the efficacy of a short-term program that is based on a biopsychosocial model of health and conceptualized by occupational therapists, physical therapists, neuropsychologists, and social workers. Methods: Of the 1573 patients treated between 2008 and 2014, 1339 were rated using a 7-tiered predefined category system. Outcome domains are compliance, affect, activity, autonomy, communication, fine motor skills, and mobility. Based on a total score, the patients were classified as impaired, functional, or highly functional. Functionality at baseline and changes after the treatment were analyzed and related to demographics, medical, and neuropsychological data. Results: At baseline, 80.8% of the patients were rated as impaired according to the total score. Impairments were predominantly observed in the domains affect, autonomy, and communication. A better total score at baseline was significantly related to a better neuropsychological functioning and a lower number of concurrent antiepileptic drugs. After the intervention 50.3% of the patients showed significant improvements regarding the total score. Compliance, activity, and affect were the most responsive domains. Conclusion: This study provides promising results with regard to the efficacy of a short-term multidisciplinary epilepsy program. Positive effects could be achieved referring to compliance, activity, and affect. The findings support the relevance of such programs. Subsequent research should focus on the transfer to everyday life. © 2018 Elsevier Inc. All rights reserved.
1. Introduction People with epilepsy are often affected by psychosocial impairments [1–3]. This in turn is usually associated with restrictive quality of life [4– 6]. Therefore the treatment of epilepsy should be extended to issues apart from seizures and seizure frequency, especially if seizures cannot be fully controlled. This is why, in Germany, specialized epilepsy centers can offer a short-term multimodal treatment for inpatients with pharmacoresistant epilepsy. The treatment is implemented in the German Related Group-system (G-DRG). It is based on a biopsychosocial model of health and includes multidisciplinary therapies such as occupational and physical therapy as well as psychological–behavioral treatment, neuropsychological training, and social work. At the Department of Epileptology in Bonn such a program has been established in 2008. While a few studies have investigated the efficacy of psychosocial or educational programs for people with epilepsy an evaluation of a shortterm multimodal program for inpatients has not yet been evaluated. The existing literature on psychosocial and educational interventions for adult patients with epilepsy has been reviewed in two relevant systematic Cochrane reviews on care delivery and self-management ⁎ Corresponding author at: Department of Epileptology, University of Bonn Medical Center, Sigmund Freud Str. 25, 53105 Bonn, Germany. E-mail address: [email protected] (F. Seyer).
https://doi.org/10.1016/j.yebeh.2018.06.017 1525-5050/© 2018 Elsevier Inc. All rights reserved.
strategies [7,8]. These reviews include articles about self-management education, specialist nurse practitioners, strategies to improve patient compliance, behavioral interventions, alternative care delivery in outpatient clinics as well as guideline implementation and patient information. In addition, there are studies addressing the efficacy of selfmanagement interventions [9–12], behavioral therapy [13,14], specialized nursing [15], and guideline implementation [16]. Altogether, a significant positive effect of psychosocial interventions for patients with epilepsy can be concluded from these studies. In Germany, the efficacy and outcome determinants of psychosocial and educational programs for patients with epilepsy have been evaluated in two relevant studies so far. The first study is about the efficacy of an educational treatment program for patients with epilepsy called MOSES [17]. The results demonstrate that MOSES significantly improves knowledge about epilepsy, coping with epilepsy, seizure frequency, and tolerance of antiepileptic drug therapy. The second study addresses changes of coping strategies in patients with pharmacoresistant epilepsy in a course of a ward-based treatment with a holistic therapeutic approach [18]. The results of this study show that the holistic therapeutic approach has a positive influence on coping strategies of patients. It increases problem-focused coping and decreases emotion-focused coping or avoidance-oriented coping. Both studies demonstrate the longterm effects of psychosocial and educational intervention programs for people with epilepsy.
F. Seyer et al. / Epilepsy & Behavior 86 (2018) 98–101
Taking this as the background for the present study, we evaluated (1) the efficacy of a short-term multidisciplinary program for inpatients with epilepsy and (2) which factors determine the outcome of such an intervention. Approval of the efficacy of the onward multimodal and multidisciplinary short-term intervention would be important for the justification and eventual modification of such programs in epilepsy. 2. Methods 2.1. Intervention The short-term multidisciplinary program is conceptualized as a modular therapeutic treatment from occupational and physical therapists as well as neurologists, psychologists, and social workers. The treatment requires that at least three of the above mentioned professions work with the patient. For the most of the patients (23.1%), the therapeutic modules are carried out daily eight times for at least 1.5 h/ day. On average, the duration in the clinic was round about 11 days (SD: 7.74 days). In detail, the program includes many different interventions like education/training of cognitive functions (e.g., attention, executive functions, memory strategies, and language), exercises in physical fitness and motor coordination for increasing the patients mobility, therapeutic counseling for a better coping with the disease and its consequences, information about metacognition for a better understanding of the cognitive processes in the brain and the influence of lesions, epilepsy, and antiepileptic drug therapy on cognition, education of seizure documentation for the monitoring of the disease and treatment effects, education in strategies for seizure self-control and reducing provoking factors, mindfulness training for relaxation, and advice in social law for a better assistance or vocational rehabilitation. Decisions for specific interventions depend on the individual needs of each patient and are defined in weekly meetings by the multidisciplinary team. The diverse interventions are examples for individual treatment options. Table 1 shows the assignment of interventions to the domains of functionality in which they should achieve a better outcome. 2.2. Instrument and data analysis procedures Each patient was evaluated by the same professional at the beginning and at the end of hospitalization. In total, 3 staff members were involved in the rating during the study period. One professional was an occupational therapist, one was a remedial pedagogue, and one was a rehabilitation pedagogue. There were no differences in coding between the 3 raters, because every professional uses the same rating scale with the same operationalization of behavior. Furthermore, there was no significant difference between the ratings of the professionals in regard to the outcome. Based on behavioral observations during the own diagnostic process and in therapeutic interactions with other healthcare employees and other patients, the following domains were assessed on a 7tiered bipolar rating scale (Supplementary material Appendix 1, Table 1): compliance, affect, activity, communication, mobility, fine motor
Table 1 Assignment of interventions to outcome dimensions. Interventions
Domains of functionality
Education/training of cognitive functions (e.g., attention, executive functions, memory strategies, and language) Exercises in physical fitness and motor coordination
Autonomy, communication
Therapeutic counseling and information about metacognition Education of seizure documentation Education in strategies for seizure self-control Mindfulness training for relaxation Advice in social law
Mobility, activity, fine motor skills, affect Compliance, affect Compliance, autonomy Autonomy Affect Autonomy
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skills, and autonomy of patients. The rating ranged from − 3 (completely impaired) over 0 (normal functionality) to +3 (functionally gifted) and was performed according to predefined behavioral criteria for each step. The domains were analyzed separately and summed up as a total score. Compliance represents the degree of patient adherence to the treatment. Affect represents the mood of patients. Activity represents the degree of action and own initiative to manage daily demands. Communication represents the degree of ability to interact verbal or nonverbal to other people. Mobility represents the degree of physical fitness. Fine motor skills represent the degree of coordination ability of fingers and hands. Autonomy represents the degree of independence from assistance. The demographics and medical data were collected from the medical files. The neuropsychological data based on results of the neuropsychological tests. The tests measured intelligence quotient (IQ) via a short form of the Hamburg-Wechsler-Intelligenztest für Erwachsene - Revision (HAWIE-R, Wechsler Adult Intelligence Scale - Revision), attention via d2, verbal memory via Verbaler Lern- und Merkfähigkeitstest (VLMT, Verbal Learning and Memory Test), figural memory via Diagnosticum für Cerebralschädigung - Revision (DCS-R, Diagnosticum for Cerebral Damage), language ability via Token Test, spatially–visually functioning via Leistungsprüfsystem (LPS, Performance Testing System) subtest 7 (mental rotation), and depressive mood via the Beck Depression Inventory (BDI I). The tests and their references are described in previous articles [19–21]. Statistical analysis comprised the evaluation of frequencies of rated impairments at baseline and follow-up. For this purpose, the information of the ratings was condensed into three categories: impaired (b0), functional (=0), and highly functional (N 0). The data were analyzed with SPSS Statistics version 24. Significant change between baseline and follow-up was analyzed using the ordinal Wilcoxon tests for dependent samples and with frequency statistics based categorical data of change. Therefore total score, compliance, affect, activity, communication, mobility, fine motor skills, and autonomy of all patients were rated at the beginning (t1) and the end (t2) of hospitalization. Improved or worsened performance was concluded when there was a respective change of one step in the 7-tiered rating scale from baseline to follow-up (e.g., from − 2 at t1 to − 1 at t2). Finally, stepwise multiple linear regression analysis was carried out to find determinants of a positive therapy response. Here gender, age, education, employment status, seizure type, duration of seizures, frequency of seizures, severity of seizures, medication, and neuropsychological impairments were included as independent variables. 3. Results 3.1. Descriptive results Within a survey period from September 2008 to October 2014 a total of 1573 inpatients participated in the short-term program. From these participants a number of 234 patients had to be excluded from the study because of missing data. Therefore a sample of 1339 patients was included in the analysis. Demographic and clinical data of these patients are listed in Table 2. 3.2. Baseline At baseline, most of the patients (80.8%) were rated as impaired in regard to the total score (Fig. 1). In detail, more than half of the patients were rated as impaired in the domains communication (65.7%), affect (63.3%), and autonomy (57.8%); exactly half of patients were rated as impaired in mobility (50.0%), and less than a half of patients were rated as impaired in fine motor skills (48.2%), activity (35.7%), and compliance (27.9%). A significant determinant for a better total score rating by the professionals at baseline is a better neuropsychological functioning (r =
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F. Seyer et al. / Epilepsy & Behavior 86 (2018) 98–101
Table 2 Demographic and clinical data of patients (n = 1339).
Table 3 Significant predictors of the total score rating by the occupational therapists.
Demographics Gender, female Age, mean ± SD (range) Education, higher–middle–low, missing Employed, yes–no, missing
53.8% 42.6 yr ± 15.6 (14–87) 14.9%–44.4%–10.3%, 30.4% 29.4%–43.8%, 26.7%
Epilepsy Symptomatic–Cryptogen–Idiopathic, missing GTCS, yes–no, missing CPS, yes–no, missing SPS, yes–no, missing PNS, yes–no, missing Duration, mean ± SD (range), missing Frequency, less–1/month–more, missing Severity, mild–medium–severe
54.7%–3.0%–24.9%, 17.4% 33.5%–49.1%, 17.4% 60.5%–22.1%, 17.4% 9.9%–72.7%, 17.4% 14.1%–68.5%, 17.4% 21.4 yr ± 15.8 (0–71), 17.8% 12.6%–23.7%–63.8%, 15.8% 4.0%–9.0%–87.0%
Medication AED T1, yes, mean ± SD (range) AED T2, yes, mean ± SD (range) Benzodiazepine T1, yes, mean ± SD (range) Benzodiazepine T2, yes, mean ± SD (range) Psychotropics T1, yes, mean ± SD (range) Psychotropics T2, yes, mean ± SD (range) Total drug load T1, mean ± SD (range) Total drug load T2, mean ± SD (range)
94.4%, 2.4 ± 1.0 (1–5) 98.0%, 2.4 ± 0.9 (1–6) 19.4%, 1.0 ± 0.1 (1–2) 12.9%, 1.0 ± 0.1 (1–2) 16.1%, 1.2 ± 0.5 (1–4) 28.5%, 1.2 ± 0.5 (1–4) 2.8 ± 1.3 (0–8) 2.9 ± 1.2 (0–7)
Neuropsychology IQ, tested, impaired Attention, tested, impaired Verbal memory, tested, impaired Figural memory, tested, impaired Language ability, tested, impaired Spatially–visually functioning, tested, impaired Depressive mood, questioned, BDI I cut-off: ≥9
18.6%, 29.7% 47.1%, 67.8% 44.4%, 67.5% 41.1%, 75.5% 26.8%, 72.1% 8.5%, 54.3% 38.2%, 65.4%
SD: standard deviation, GTCS: generalized tonic–clonic seizures, CPS: complex partial seizures, SPS: simple partial seizures, PNS: psychogenic nonepileptic seizures, AED: antiepileptic drugs, T1: first time of measurement, T2: second time of measurement, IQ: intelligence quotient.
0.399, p = .000, n = 651), and a worse rating was associated with a higher number of antiepileptic drug (AED) (r = −0.185, p = .000, n = 1339) (Table 3). Referring to the neuropsychological functioning the IQ is the strongest positive predictor of the total score rating at baseline (r = 0.386, p = .000, n = 249), but there are also significant influences of attention (r = 0.369, p = .000, n = 630), figural memory (r = 0.338, p = .000, n = 550), language ability (r = 0.273, p = .000, n = 359), spatially–visually functioning (r = 0.241, p = .010, n = 114), and verbal memory (r = 0.234, p = .000, n = 595). With regard to specific AED, the strongest negative relation to the total score at baseline was observed for valproic acid (r = − 0.111, p = .000, n = 343). Other AED with a negative influence on the total score at baseline are zonisamide (r = −0.099, p = .000, n = 147), rufinamide (r = 0.092,
Fig. 1. Functioning of patients at baseline.
Model
Predictor
β
t
p
F = 25.402, p = .000 r2 = 0.184
Neuropsychological functioning Number of AED
0.371 −0.153
6.034 2.486
.000 .014
p = .001, n = 39), phenytoin (r = − 0.086, p = .002, n = 74), phenobarbital (r = − 0.080, p = .003, n = 130), lacosamide (r = − 0.073, p = .007, n = 238), and levetiracetam (r = − 0.069, p = .012, n = 702). The total score at baseline was not influenced by age, gender, education, employment, depressive mood, seizure type, seizure frequency, seizure severity, etiology or duration of epilepsy, and the number of benzodiazepines or psychotropics. 3.3. Outcome and its determinants Compared to the total score at baseline (Mt1: −3.70, SDt1: 4.306) the total score at follow-up (Mt2: −2.58, SDt2: 4.565) indicated significant improvements for 50.3% of the patients (Fig. 2). Correspondingly, 37.4% of the patients showed no significant individual change and 12.3% deteriorated with regard to the total score. Compliance improved in 30.3% of the patients (Mt1: − 0.12, SDt1 = 0.859, Mt2: 0.18, SDt2: 0.929). Hence, compliance is the domain showing the most positive effects, followed by activity (Mt1: −0.28, SDt1 = 0.853, Mt2: −0.04, SDt2: 0.908) and affect (Mt1: −0.78, SDt1 = 0.874, Mt2: −0.56, SDt2: 0.910) with a better outcome for 25.3% and 24.1% of the patients, respectively. Thus, it appears that compliance, activity, and affect were the domains with the most frequent positive effects. Slightly fewer patients (12.9%) reached a better individual functioning in autonomy (Mt1: − 0.60, SDt1 = 1.020, Mt2: −0.47, SDt2: 1.060). Communication (Mt1: −0.79, SDt1 = 0.916, Mt2: −0.70, SDt2: 0.912), fine motor skills (Mt1: −0.52, SDt1 = 1.074, Mt2: − 0.46, SDt2: 1.067), and mobility (Mt1: − 0.61, SDt1 = 0.915, Mt2: − 0.53, SDt2: 0.915) are also domains with smaller effects. Only 10.2%, 8.7%, and 8.4% of the patients respectively achieved better ratings at follow-up compared to the baseline. Deteriorations in individual functioning are most frequently seen in activity (6.1%), affect (6.1%), and compliance (5.6%). Furthermore, worse individual functioning in autonomy (2.6%), communication (2.6%), fine motor skills (2.8%), and mobility (1.3%) was an extremely rare outcome. Nevertheless, compared to the aforementioned positive effects these deteriorations were much less frequent. Further statistical analysis did not reveal any significant determinants for the change from t1 to t1. 4. Discussion Overall, the results suggest some efficacy of a short-term multidisciplinary intervention program for inpatients with pharmacoresistant
Fig. 2. Proportion of patients with significant changes of individual functioning between T1 and T2.
F. Seyer et al. / Epilepsy & Behavior 86 (2018) 98–101
epilepsy. This outcome in general is in concordance with the findings of studies, which analyzed psychosocial and educational intervention programs with a longer follow-up (e.g., [17, 18]). The high percentages of patients with impaired functionality in most of the domains at baseline underline the need for multidisciplinary programs. Furthermore, a better outcome by half of the patients in total score at follow-up is an argument for the utility of short-term interventions. A closer look at the results reveals that within such a short time period the strongest effects can be achieved in more psychological domains and in domains with less severe impairment at baseline. This suggests that primarily psychological aspects and mild to moderate impairments can be influenced in a short time period. Although being issues of the intervention, it makes sense that changes in domains like mobility, communication, and autonomy require much more time. Referring to the significant determinants of the rating at baseline the results show associations with objective neuropsychological functioning and the number of concurrent AED. This is in line with previous studies on the cognitive impact of AED (e.g., [22–25]). Thus, it is coherent that a higher number of AED contribute to a worse neuropsychological functioning, which has an impact on everyday performance and is therefore observable by the therapists. This could be an indicator for the concordance between therapists' rating and objective assessment of cognition. Altogether, it should be taken into account that the effect sizes for a single AED are very small concerning the impact on the total score. The reason for that could be that no specific AED is responsible for the influence on the total score but rather the number of concurrent AED. Furthermore, the study could not identify significant outcome determinants. One explanation for that could be that relevant variables have not been considered. Other major limitations of this study are its exploratory character and the lack of a control group. Therefore, it is not clear if the effects can be solely attributed to the interventions of the program or to other uncontrolled factors. Secondly, in contrast to existing studies, our findings are based on assessments of clinical professionals. This fact on the one hand could provide a more reliable rating in relation to surveys, which were based only on patients' self-report. On the other hand the rating of clinical professionals could be confounded by a tendency towards self-affirmation of their own work. Furthermore the huge sample size has positive and negative aspects. In relation to other clinical studies, the large number of participants provides a high statistical power of the results. However, this large number of consecutive patients contains a very heterogeneous sample, which implies a lack of specificity. 5. Conclusion Overall, the present pilot study provides promising results with regard to the efficacy of a short-time multidisciplinary intervention program for inpatients with epilepsy. The main statement is that the evaluated short-term epilepsy program appears effective for half of the patients. The validity of the therapists' ratings is supported by their correlation to objectively assess neuropsychological functioning and the total drug load, i.e., number of concurrent AED. Short-term programs are an effective alternative therapy next to long-term interventions. Such an approach should be taken into consideration in light of increasing costs in the healthcare system. Nevertheless the short-term program is no substitution for patients who need long-time therapeutic support. It also should be taken into account that the conclusions about the efficacy of the evaluated program are preliminary and need to be
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confirmed by subsequent research that is randomized-controlled, restricted to a well-defined sample, using standardized measures, and capturing carry over effects to everyday life. Conflict of interest The authors have no conflict of interest to declare. Supplementary data to this article can be found online at https://doi. org/10.1016/j.yebeh.2018.06.017.
References [1] Baker GA. The psychosocial burden of epilepsy. Epilepsia 2002;43:26–30. [2] Quintas R, Raggi A, Giovannetti AM, Pagani M, Sabariego C, Cieza A, et al. Psychosocial difficulties in people with epilepsy: a systematic review of literature from 2005 until 2010. Epilepsy Behav 2012;25:60–7. [3] Mccagh J, Fisk JE, Baker GA. Epilepsy, psychosocial and cognitive functioning. Epilepsy Res 2009;86:1–14. [4] Suurmeijer TPBM, Reuvekamp MF, Aldenkamp BP. Social functioning, psychological functioning, and quality of life in epilepsy. Epilepsia 2001;42:1160–8. [5] Jacoby A, Baker GA. Quality-of-life trajectories in epilepsy: a review of literature. Epilepsy Behav 2008;12:557–71. [6] Azuma H, Akechi T. Effects of psychosocial functioning, depression, seizure frequency, and employment on quality of life in patients with epilepsy. Epilepsy Behav 2014;41:18–20. [7] Bradley PM, Lindsay B. Care delivery and self-management strategies for adults with epilepsy (review). Cochrane Database Syst Rev 2008(1) [The Cochrane Collaboration 2009. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD006244.pub2/epdf, 20.05.2018]. [8] Bradley PM, Lindsay B, Fleeman N. Care delivery and self-management strategies for adults with epilepsy (review). Cochrane Database Syst Rev 2016(2) [The Cochrane Collaboration 2016. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD006244. pub3/epdf, 14.03.2016]. [9] Fitzsimons M, Normand C, Varley J, Delanty N. Evidence-based models of care for people with epilepsy. Epilepsy Behav 2012;23:1–6. [10] Beretta S, Beghi E, Messina P, Gerardi F, Pescini F, La Licata A, et al. Comprehensive educational plan for patients with epilepsy and comorbidity (EDU-COM): a pragmatic randomised trial. J Neurol Neurosurg Psychiatry 2014;85:889–94. [11] Dilorio C, Escoffery C, Mccarty F, Ywager KA, Henry TR, Koganti A, et al. Evaluation of WebEase: an epilepsy self-management web site. Health Educ Res 2009;24:185–97. [12] Dilorio C, Reisinger EL, Yeager KA, Mccarty F. A telephone-based self-management program for people with epilepsy. Epilepsy Behav 2009;14:232–6. [13] Minshall I, Smith D. The impact of a citywide audit with educational intervention on the care of patients with epilepsy. Seizure 2008;17:261–8. [14] Reiter JM, Andrews DJ. A neurobehavioral approach for treatment of complex partial epilepsy: efficacy. Seizure 2000;9:198–203. [15] Hosking PG, Duncan JS, Sander JM. The epilepsy nurse specialist at a tertiary care hospital — improving the interface between primary and tertiary care. Seizure 2002;11:494–9. [16] Williams B, Skinner J, Dowell J, Roberts R, Crombie I, Davis J. General practitioners' for the failure of a randomized controlled trial (the TIGER trial) to implement epilepsy guidelines in primary care. Epilepsia 2007;48:1275–82. [17] May TW, Pfäfflin M. The efficacy of an educational treatment program for patients with epilepsy (MOSES): results of a controlled, randomized study. Epilepsia 2002; 43:539–49. [18] Rösche J, Uhlmann C, Weber R. Changes of coping strategies in patients with therapy refractory epilepsy in a course of a ward based treatment with a holistic therapeutic approach. Psychother Psychosom Med Psychol 2004;54:4–8. [19] Grote A, Witt JA, Surges R, von Lehe M, Pieper M, Elger CE, et al. A second chance — reoperation in patients with failed surgery for intractable epilepsy: long-term outcome, neuropsychology and complications. J Neurol Neurosurg Psychiatry 2016; 87:379–85. [20] Witt JA, Helmstaedter C. Neuropsychology in epilepsy. Fortschr Neurol Psychiatr 2009;77:691–8. [21] Helmstaedter C, Petzold I, Bien CG. The cognitive consequence of resecting nonlesional tissues in epilepsy surgery — results from MRI- and histopathology-negative patients with temporal lobe epilepsy. Epilepsia 2011;52:1402–8. [22] Park SP, Kwon SH. Cognitive effects of antiepileptic drugs. J Clin Neurol 2008;4: 99–106. [23] Meador KJ. Cognitive and memory effects of the new antiepileptic drugs. Epilepsy Res 2006;68:63–7. [24] Eddy CM, Rickards HE, Cavanna AE. The cognitive impact of antiepileptic drugs. Ther Adv Neurol Disord 2011;4:385–407. [25] Witt JA, Helmstaedter C. Monitoring the cognitive effects of antiepileptic pharmacotherapy — approaching the individual patient. Epilepsy Behav 2013;26:450–6.
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
The efficacy of a short-term multidisciplinary epilepsy program Frank Seyer ⁎, Juri-Alexander Witt, Julia Taube, Christoph Helmstaedter Department of Epileptology, University of Bonn Medical Center, Bonn, Germany
a r t i c l e
i n f o
Article history: Received 31 January 2018 Revised 11 June 2018 Accepted 11 June 2018 Available online 17 July 2018 Keywords: Pharmacoresistant epilepsy Treatment efficacy Multidisciplinary team Psychosocial assessment Short-term intervention
a b s t r a c t Rationale: Epilepsy is more than having seizures. Therefore, specialized epilepsy centers in Germany offer multidisciplinary programs for inpatients with pharmacoresistant epilepsies. This monocentric study evaluated the efficacy of a short-term program that is based on a biopsychosocial model of health and conceptualized by occupational therapists, physical therapists, neuropsychologists, and social workers. Methods: Of the 1573 patients treated between 2008 and 2014, 1339 were rated using a 7-tiered predefined category system. Outcome domains are compliance, affect, activity, autonomy, communication, fine motor skills, and mobility. Based on a total score, the patients were classified as impaired, functional, or highly functional. Functionality at baseline and changes after the treatment were analyzed and related to demographics, medical, and neuropsychological data. Results: At baseline, 80.8% of the patients were rated as impaired according to the total score. Impairments were predominantly observed in the domains affect, autonomy, and communication. A better total score at baseline was significantly related to a better neuropsychological functioning and a lower number of concurrent antiepileptic drugs. After the intervention 50.3% of the patients showed significant improvements regarding the total score. Compliance, activity, and affect were the most responsive domains. Conclusion: This study provides promising results with regard to the efficacy of a short-term multidisciplinary epilepsy program. Positive effects could be achieved referring to compliance, activity, and affect. The findings support the relevance of such programs. Subsequent research should focus on the transfer to everyday life. © 2018 Elsevier Inc. All rights reserved.
1. Introduction People with epilepsy are often affected by psychosocial impairments [1–3]. This in turn is usually associated with restrictive quality of life [4– 6]. Therefore the treatment of epilepsy should be extended to issues apart from seizures and seizure frequency, especially if seizures cannot be fully controlled. This is why, in Germany, specialized epilepsy centers can offer a short-term multimodal treatment for inpatients with pharmacoresistant epilepsy. The treatment is implemented in the German Related Group-system (G-DRG). It is based on a biopsychosocial model of health and includes multidisciplinary therapies such as occupational and physical therapy as well as psychological–behavioral treatment, neuropsychological training, and social work. At the Department of Epileptology in Bonn such a program has been established in 2008. While a few studies have investigated the efficacy of psychosocial or educational programs for people with epilepsy an evaluation of a shortterm multimodal program for inpatients has not yet been evaluated. The existing literature on psychosocial and educational interventions for adult patients with epilepsy has been reviewed in two relevant systematic Cochrane reviews on care delivery and self-management ⁎ Corresponding author at: Department of Epileptology, University of Bonn Medical Center, Sigmund Freud Str. 25, 53105 Bonn, Germany. E-mail address: [email protected] (F. Seyer).
https://doi.org/10.1016/j.yebeh.2018.06.017 1525-5050/© 2018 Elsevier Inc. All rights reserved.
strategies [7,8]. These reviews include articles about self-management education, specialist nurse practitioners, strategies to improve patient compliance, behavioral interventions, alternative care delivery in outpatient clinics as well as guideline implementation and patient information. In addition, there are studies addressing the efficacy of selfmanagement interventions [9–12], behavioral therapy [13,14], specialized nursing [15], and guideline implementation [16]. Altogether, a significant positive effect of psychosocial interventions for patients with epilepsy can be concluded from these studies. In Germany, the efficacy and outcome determinants of psychosocial and educational programs for patients with epilepsy have been evaluated in two relevant studies so far. The first study is about the efficacy of an educational treatment program for patients with epilepsy called MOSES [17]. The results demonstrate that MOSES significantly improves knowledge about epilepsy, coping with epilepsy, seizure frequency, and tolerance of antiepileptic drug therapy. The second study addresses changes of coping strategies in patients with pharmacoresistant epilepsy in a course of a ward-based treatment with a holistic therapeutic approach [18]. The results of this study show that the holistic therapeutic approach has a positive influence on coping strategies of patients. It increases problem-focused coping and decreases emotion-focused coping or avoidance-oriented coping. Both studies demonstrate the longterm effects of psychosocial and educational intervention programs for people with epilepsy.
F. Seyer et al. / Epilepsy & Behavior 86 (2018) 98–101
Taking this as the background for the present study, we evaluated (1) the efficacy of a short-term multidisciplinary program for inpatients with epilepsy and (2) which factors determine the outcome of such an intervention. Approval of the efficacy of the onward multimodal and multidisciplinary short-term intervention would be important for the justification and eventual modification of such programs in epilepsy. 2. Methods 2.1. Intervention The short-term multidisciplinary program is conceptualized as a modular therapeutic treatment from occupational and physical therapists as well as neurologists, psychologists, and social workers. The treatment requires that at least three of the above mentioned professions work with the patient. For the most of the patients (23.1%), the therapeutic modules are carried out daily eight times for at least 1.5 h/ day. On average, the duration in the clinic was round about 11 days (SD: 7.74 days). In detail, the program includes many different interventions like education/training of cognitive functions (e.g., attention, executive functions, memory strategies, and language), exercises in physical fitness and motor coordination for increasing the patients mobility, therapeutic counseling for a better coping with the disease and its consequences, information about metacognition for a better understanding of the cognitive processes in the brain and the influence of lesions, epilepsy, and antiepileptic drug therapy on cognition, education of seizure documentation for the monitoring of the disease and treatment effects, education in strategies for seizure self-control and reducing provoking factors, mindfulness training for relaxation, and advice in social law for a better assistance or vocational rehabilitation. Decisions for specific interventions depend on the individual needs of each patient and are defined in weekly meetings by the multidisciplinary team. The diverse interventions are examples for individual treatment options. Table 1 shows the assignment of interventions to the domains of functionality in which they should achieve a better outcome. 2.2. Instrument and data analysis procedures Each patient was evaluated by the same professional at the beginning and at the end of hospitalization. In total, 3 staff members were involved in the rating during the study period. One professional was an occupational therapist, one was a remedial pedagogue, and one was a rehabilitation pedagogue. There were no differences in coding between the 3 raters, because every professional uses the same rating scale with the same operationalization of behavior. Furthermore, there was no significant difference between the ratings of the professionals in regard to the outcome. Based on behavioral observations during the own diagnostic process and in therapeutic interactions with other healthcare employees and other patients, the following domains were assessed on a 7tiered bipolar rating scale (Supplementary material Appendix 1, Table 1): compliance, affect, activity, communication, mobility, fine motor
Table 1 Assignment of interventions to outcome dimensions. Interventions
Domains of functionality
Education/training of cognitive functions (e.g., attention, executive functions, memory strategies, and language) Exercises in physical fitness and motor coordination
Autonomy, communication
Therapeutic counseling and information about metacognition Education of seizure documentation Education in strategies for seizure self-control Mindfulness training for relaxation Advice in social law
Mobility, activity, fine motor skills, affect Compliance, affect Compliance, autonomy Autonomy Affect Autonomy
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skills, and autonomy of patients. The rating ranged from − 3 (completely impaired) over 0 (normal functionality) to +3 (functionally gifted) and was performed according to predefined behavioral criteria for each step. The domains were analyzed separately and summed up as a total score. Compliance represents the degree of patient adherence to the treatment. Affect represents the mood of patients. Activity represents the degree of action and own initiative to manage daily demands. Communication represents the degree of ability to interact verbal or nonverbal to other people. Mobility represents the degree of physical fitness. Fine motor skills represent the degree of coordination ability of fingers and hands. Autonomy represents the degree of independence from assistance. The demographics and medical data were collected from the medical files. The neuropsychological data based on results of the neuropsychological tests. The tests measured intelligence quotient (IQ) via a short form of the Hamburg-Wechsler-Intelligenztest für Erwachsene - Revision (HAWIE-R, Wechsler Adult Intelligence Scale - Revision), attention via d2, verbal memory via Verbaler Lern- und Merkfähigkeitstest (VLMT, Verbal Learning and Memory Test), figural memory via Diagnosticum für Cerebralschädigung - Revision (DCS-R, Diagnosticum for Cerebral Damage), language ability via Token Test, spatially–visually functioning via Leistungsprüfsystem (LPS, Performance Testing System) subtest 7 (mental rotation), and depressive mood via the Beck Depression Inventory (BDI I). The tests and their references are described in previous articles [19–21]. Statistical analysis comprised the evaluation of frequencies of rated impairments at baseline and follow-up. For this purpose, the information of the ratings was condensed into three categories: impaired (b0), functional (=0), and highly functional (N 0). The data were analyzed with SPSS Statistics version 24. Significant change between baseline and follow-up was analyzed using the ordinal Wilcoxon tests for dependent samples and with frequency statistics based categorical data of change. Therefore total score, compliance, affect, activity, communication, mobility, fine motor skills, and autonomy of all patients were rated at the beginning (t1) and the end (t2) of hospitalization. Improved or worsened performance was concluded when there was a respective change of one step in the 7-tiered rating scale from baseline to follow-up (e.g., from − 2 at t1 to − 1 at t2). Finally, stepwise multiple linear regression analysis was carried out to find determinants of a positive therapy response. Here gender, age, education, employment status, seizure type, duration of seizures, frequency of seizures, severity of seizures, medication, and neuropsychological impairments were included as independent variables. 3. Results 3.1. Descriptive results Within a survey period from September 2008 to October 2014 a total of 1573 inpatients participated in the short-term program. From these participants a number of 234 patients had to be excluded from the study because of missing data. Therefore a sample of 1339 patients was included in the analysis. Demographic and clinical data of these patients are listed in Table 2. 3.2. Baseline At baseline, most of the patients (80.8%) were rated as impaired in regard to the total score (Fig. 1). In detail, more than half of the patients were rated as impaired in the domains communication (65.7%), affect (63.3%), and autonomy (57.8%); exactly half of patients were rated as impaired in mobility (50.0%), and less than a half of patients were rated as impaired in fine motor skills (48.2%), activity (35.7%), and compliance (27.9%). A significant determinant for a better total score rating by the professionals at baseline is a better neuropsychological functioning (r =
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Table 2 Demographic and clinical data of patients (n = 1339).
Table 3 Significant predictors of the total score rating by the occupational therapists.
Demographics Gender, female Age, mean ± SD (range) Education, higher–middle–low, missing Employed, yes–no, missing
53.8% 42.6 yr ± 15.6 (14–87) 14.9%–44.4%–10.3%, 30.4% 29.4%–43.8%, 26.7%
Epilepsy Symptomatic–Cryptogen–Idiopathic, missing GTCS, yes–no, missing CPS, yes–no, missing SPS, yes–no, missing PNS, yes–no, missing Duration, mean ± SD (range), missing Frequency, less–1/month–more, missing Severity, mild–medium–severe
54.7%–3.0%–24.9%, 17.4% 33.5%–49.1%, 17.4% 60.5%–22.1%, 17.4% 9.9%–72.7%, 17.4% 14.1%–68.5%, 17.4% 21.4 yr ± 15.8 (0–71), 17.8% 12.6%–23.7%–63.8%, 15.8% 4.0%–9.0%–87.0%
Medication AED T1, yes, mean ± SD (range) AED T2, yes, mean ± SD (range) Benzodiazepine T1, yes, mean ± SD (range) Benzodiazepine T2, yes, mean ± SD (range) Psychotropics T1, yes, mean ± SD (range) Psychotropics T2, yes, mean ± SD (range) Total drug load T1, mean ± SD (range) Total drug load T2, mean ± SD (range)
94.4%, 2.4 ± 1.0 (1–5) 98.0%, 2.4 ± 0.9 (1–6) 19.4%, 1.0 ± 0.1 (1–2) 12.9%, 1.0 ± 0.1 (1–2) 16.1%, 1.2 ± 0.5 (1–4) 28.5%, 1.2 ± 0.5 (1–4) 2.8 ± 1.3 (0–8) 2.9 ± 1.2 (0–7)
Neuropsychology IQ, tested, impaired Attention, tested, impaired Verbal memory, tested, impaired Figural memory, tested, impaired Language ability, tested, impaired Spatially–visually functioning, tested, impaired Depressive mood, questioned, BDI I cut-off: ≥9
18.6%, 29.7% 47.1%, 67.8% 44.4%, 67.5% 41.1%, 75.5% 26.8%, 72.1% 8.5%, 54.3% 38.2%, 65.4%
SD: standard deviation, GTCS: generalized tonic–clonic seizures, CPS: complex partial seizures, SPS: simple partial seizures, PNS: psychogenic nonepileptic seizures, AED: antiepileptic drugs, T1: first time of measurement, T2: second time of measurement, IQ: intelligence quotient.
0.399, p = .000, n = 651), and a worse rating was associated with a higher number of antiepileptic drug (AED) (r = −0.185, p = .000, n = 1339) (Table 3). Referring to the neuropsychological functioning the IQ is the strongest positive predictor of the total score rating at baseline (r = 0.386, p = .000, n = 249), but there are also significant influences of attention (r = 0.369, p = .000, n = 630), figural memory (r = 0.338, p = .000, n = 550), language ability (r = 0.273, p = .000, n = 359), spatially–visually functioning (r = 0.241, p = .010, n = 114), and verbal memory (r = 0.234, p = .000, n = 595). With regard to specific AED, the strongest negative relation to the total score at baseline was observed for valproic acid (r = − 0.111, p = .000, n = 343). Other AED with a negative influence on the total score at baseline are zonisamide (r = −0.099, p = .000, n = 147), rufinamide (r = 0.092,
Fig. 1. Functioning of patients at baseline.
Model
Predictor
β
t
p
F = 25.402, p = .000 r2 = 0.184
Neuropsychological functioning Number of AED
0.371 −0.153
6.034 2.486
.000 .014
p = .001, n = 39), phenytoin (r = − 0.086, p = .002, n = 74), phenobarbital (r = − 0.080, p = .003, n = 130), lacosamide (r = − 0.073, p = .007, n = 238), and levetiracetam (r = − 0.069, p = .012, n = 702). The total score at baseline was not influenced by age, gender, education, employment, depressive mood, seizure type, seizure frequency, seizure severity, etiology or duration of epilepsy, and the number of benzodiazepines or psychotropics. 3.3. Outcome and its determinants Compared to the total score at baseline (Mt1: −3.70, SDt1: 4.306) the total score at follow-up (Mt2: −2.58, SDt2: 4.565) indicated significant improvements for 50.3% of the patients (Fig. 2). Correspondingly, 37.4% of the patients showed no significant individual change and 12.3% deteriorated with regard to the total score. Compliance improved in 30.3% of the patients (Mt1: − 0.12, SDt1 = 0.859, Mt2: 0.18, SDt2: 0.929). Hence, compliance is the domain showing the most positive effects, followed by activity (Mt1: −0.28, SDt1 = 0.853, Mt2: −0.04, SDt2: 0.908) and affect (Mt1: −0.78, SDt1 = 0.874, Mt2: −0.56, SDt2: 0.910) with a better outcome for 25.3% and 24.1% of the patients, respectively. Thus, it appears that compliance, activity, and affect were the domains with the most frequent positive effects. Slightly fewer patients (12.9%) reached a better individual functioning in autonomy (Mt1: − 0.60, SDt1 = 1.020, Mt2: −0.47, SDt2: 1.060). Communication (Mt1: −0.79, SDt1 = 0.916, Mt2: −0.70, SDt2: 0.912), fine motor skills (Mt1: −0.52, SDt1 = 1.074, Mt2: − 0.46, SDt2: 1.067), and mobility (Mt1: − 0.61, SDt1 = 0.915, Mt2: − 0.53, SDt2: 0.915) are also domains with smaller effects. Only 10.2%, 8.7%, and 8.4% of the patients respectively achieved better ratings at follow-up compared to the baseline. Deteriorations in individual functioning are most frequently seen in activity (6.1%), affect (6.1%), and compliance (5.6%). Furthermore, worse individual functioning in autonomy (2.6%), communication (2.6%), fine motor skills (2.8%), and mobility (1.3%) was an extremely rare outcome. Nevertheless, compared to the aforementioned positive effects these deteriorations were much less frequent. Further statistical analysis did not reveal any significant determinants for the change from t1 to t1. 4. Discussion Overall, the results suggest some efficacy of a short-term multidisciplinary intervention program for inpatients with pharmacoresistant
Fig. 2. Proportion of patients with significant changes of individual functioning between T1 and T2.
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epilepsy. This outcome in general is in concordance with the findings of studies, which analyzed psychosocial and educational intervention programs with a longer follow-up (e.g., [17, 18]). The high percentages of patients with impaired functionality in most of the domains at baseline underline the need for multidisciplinary programs. Furthermore, a better outcome by half of the patients in total score at follow-up is an argument for the utility of short-term interventions. A closer look at the results reveals that within such a short time period the strongest effects can be achieved in more psychological domains and in domains with less severe impairment at baseline. This suggests that primarily psychological aspects and mild to moderate impairments can be influenced in a short time period. Although being issues of the intervention, it makes sense that changes in domains like mobility, communication, and autonomy require much more time. Referring to the significant determinants of the rating at baseline the results show associations with objective neuropsychological functioning and the number of concurrent AED. This is in line with previous studies on the cognitive impact of AED (e.g., [22–25]). Thus, it is coherent that a higher number of AED contribute to a worse neuropsychological functioning, which has an impact on everyday performance and is therefore observable by the therapists. This could be an indicator for the concordance between therapists' rating and objective assessment of cognition. Altogether, it should be taken into account that the effect sizes for a single AED are very small concerning the impact on the total score. The reason for that could be that no specific AED is responsible for the influence on the total score but rather the number of concurrent AED. Furthermore, the study could not identify significant outcome determinants. One explanation for that could be that relevant variables have not been considered. Other major limitations of this study are its exploratory character and the lack of a control group. Therefore, it is not clear if the effects can be solely attributed to the interventions of the program or to other uncontrolled factors. Secondly, in contrast to existing studies, our findings are based on assessments of clinical professionals. This fact on the one hand could provide a more reliable rating in relation to surveys, which were based only on patients' self-report. On the other hand the rating of clinical professionals could be confounded by a tendency towards self-affirmation of their own work. Furthermore the huge sample size has positive and negative aspects. In relation to other clinical studies, the large number of participants provides a high statistical power of the results. However, this large number of consecutive patients contains a very heterogeneous sample, which implies a lack of specificity. 5. Conclusion Overall, the present pilot study provides promising results with regard to the efficacy of a short-time multidisciplinary intervention program for inpatients with epilepsy. The main statement is that the evaluated short-term epilepsy program appears effective for half of the patients. The validity of the therapists' ratings is supported by their correlation to objectively assess neuropsychological functioning and the total drug load, i.e., number of concurrent AED. Short-term programs are an effective alternative therapy next to long-term interventions. Such an approach should be taken into consideration in light of increasing costs in the healthcare system. Nevertheless the short-term program is no substitution for patients who need long-time therapeutic support. It also should be taken into account that the conclusions about the efficacy of the evaluated program are preliminary and need to be
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confirmed by subsequent research that is randomized-controlled, restricted to a well-defined sample, using standardized measures, and capturing carry over effects to everyday life. Conflict of interest The authors have no conflict of interest to declare. Supplementary data to this article can be found online at https://doi. org/10.1016/j.yebeh.2018.06.017.
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