Epilepsy & Behavior 39 (2014) 130–134
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Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Improving the mental health of adolescents with epilepsy through a group cognitive behavioral therapy program Loretta Carbone a,⁎, Melissa Plegue b, Ashley Barnes c, Renée Shellhaas c a b c
Department of Social Work, University of Michigan Health System, Ann Arbor, MI, USA Center for Statistical Consultation and Research, University of Michigan, Ann Arbor, MI, USA Pediatrics & Communicable Diseases, University of Michigan Health System, Ann Arbor, MI, USA
a r t i c l e
i n f o
Article history: Received 25 April 2014 Revised 21 July 2014 Accepted 23 July 2014 Available online 18 September 2014 Keywords: Adolescent Cognitive behavioral therapy Epilepsy Mental health Survey Questionnaire Comorbidities
a b s t r a c t The threat of unpredictable seizures makes epilepsy unique among childhood chronic illnesses. One consequence is that people who have childhood-onset epilepsy often have poor social adjustment and competence in adulthood. Better emotional and social functioning could improve long-term outcomes. Thirty-four adolescents with epilepsy participated in a group cognitive behavioral therapy program designed to enhance their level of psychosocial functioning. Baseline Strength and Difficulty Questionnaire scores suggested that many participants had difficulties with emotions, concentration, and social functioning, with parent-reported Impact scores significantly worse than adolescent-reported scores (p = 0.005). Four months after the intervention, adolescentreported Prosocial Behavior scores significantly improved (p = 0.03). Parent-reported scores improved significantly at follow-up, compared with baseline, in Peer Problems (p = 0.04), Impact (p = 0.001), and Prosocial Behavior (p = 0.004) scores. Adolescents with lower socioeconomic status reported the greatest improvements (p = 0.01). A brief CBT intervention was effective and resulted in improved mental health indices and social functioning for adolescents with epilepsy. © 2014 Elsevier Inc. All rights reserved.
1. Introduction Beyond seizures, epilepsy has been increasingly recognized as a “spectrum disorder” which confers risk of negative outcomes in many aspects of the lives of children and their families [1]. These include important mental health comorbidities which impact the emotional, psychological, academic, and social well-being of affected children. Compared with healthy children, as well as children with other chronic illnesses, children with current epilepsy are more likely to experience depression, anxiety, attention deficit hyperactivity disorder (ADHD), behavioral problems, learning disability, developmental delay, and autism spectrum disorder [2,3]. Although more than 60% of children with epilepsy meet the criteria for a DSM-IV psychiatric diagnosis, fewer than half have access to mental health care [4]. Compared with children with other chronic illnesses, more children with epilepsy perceive events in their world as out of control [2,5,6]. One of the possible consequences of this perception is that adolescents who have childhood-onset epilepsy without other neurologic deficits will have poor social adjustment and competence in adulthood [7,8]. Even when seizures are well-controlled and the adolescent/young ⁎ Corresponding author at: Department of Social Work, 1500 E. Medical Center Dr., D2202 MPB, Ann Arbor, MI 48109-4279, USA. Tel.: +1 734 232 8896; fax: +1 734 936 9110. E-mail address: [email protected] (L. Carbone).
http://dx.doi.org/10.1016/j.yebeh.2014.07.024 1525-5050/© 2014 Elsevier Inc. All rights reserved.
adult has normal cognitive skills, suboptimal long-term social outcome is very common [7–10]. The risk of being unemployed or having disability is threefold higher among adults who had epilepsy diagnosed in childhood than healthy controls [7]. Adults with epilepsy have lower socioeconomic status, higher unemployment rates, and lower work placement than expected for level of training [7,11]. Interventions are urgently needed to avoid such adverse lifelong outcomes, to benefit affected individuals and their families, as well as to reduce financial pressures on government support programs, such as income and insurance programs for people who are disabled from working and/or poor. We hypothesized that participation in a group cognitive behavioral therapy (CBT) workshop would empower adolescents with epilepsy, thereby improving their social and emotional well-being. Cognitive behavioral therapy has been shown to benefit adolescents with negative thought patterns arising from a variety of causes, including chronic pain [12], anxiety, and associated somatic complaints [13] due to epilepsy [14] and anxiety and emotional adjustment related to traumatic brain injury [15,16]. Group-based formats have previously been demonstrated to improve knowledge and medical self-management as well as quality of life and depression, with trends toward improved social functioning [17–19]. The purpose of this study was to develop an intervention program based upon a CBT model designed to improve overall mental health and social functioning, as measured by the Strength and Difficulties Questionnaire (SDQ) Total Difficulties and Impact scores [20], adjusted
L. Carbone et al. / Epilepsy & Behavior 39 (2014) 130–134
for relevant medical and psychosocial variables. In addition to this primary outcome, we also aimed to evaluate the feasibility and effectiveness of an internet conference-based online peer group intervention compared with an in-person group session. Finally, we planned to evaluate the concordance of adolescents' and their parents' assessments of mental health and social impact of epilepsy.
Table 1 Group Intervention Content. Title
2
2.1. Intervention design
3
Coping with Epilepsy: A Group Program for Teens was developed by two of the authors (LC, a master's-prepared social worker and RS, a pediatric epileptologist) and was modeled on a published manual-based therapeutic intervention [21]. The groups were facilitated by two master's-prepared social workers, one of the authors and a second social worker who was trained to facilitate the group intervention. To enhance recruitment and retention, we offered the program in two formats. The first was a one-day (6-hour) workshop format for adolescents willing to come to an in-person group held at C.S. Mott Children's Hospital. Adolescents not able to come to the hospital due to distance or transportation issues participated in a weekly interactive web-based program. Parents consented to have their children participate in an online group after the risks inherent in internet contact were clearly communicated to them. The online group was held for 1 h weekly for 6 weeks, using a video conferencing and instant messaging application available for desktop, mobile devices, and tablets (ooVoo, New York, NY; the facilitator purchased a version of ooVoo without advertisements and initiated the call). Tablets were provided for adolescents who did not have access to a computer or a smartphone. Web cameras were provided for those in need of one. The first hour of each program addressed epilepsy education and was provided to the adolescents together with their parents. The adolescents participated independently in the rest of the modules. Parents were provided with a copy of the participant manual, but there was no other parent-focused intervention. This study was approved by the University of Michigan Institutional Review Board.
4
The CBT program consisted of six modules, designed with a mixture of interactive and didactic activities to maintain the adolescents' attention. We began with an interactive introductory activity which led into a didactic session on epilepsy. A team-building exercise was then followed by a presentation of CBT concepts, interspersed with interactive exercises related to the content. The content and exercises in the workbook were designed to provide the basic concepts of CBT with the overall goal of learning how to change negative thought patterns in order to interpret the environment in a less negative way, as well as to solidify the didactic learning through an exposure task. For the last module of the workshop, participants worked in small groups to prepare and provide a presentation about epilepsy to their peers. For the online group, individuals prepared a short presentation on epilepsy for the last group session. The goal of this final exercise was to parallel an “exposure” task to decrease adolescents' anxieties about talking about epilepsy with their peers. The workshop content is outlined in Table 1. Regular breaks, as well as lunch, were provided during the daylong in-person group sessions. 2.3. Participants Participants were recruited through the University of Michigan Health System Pediatric Neurology clinic, as well as the Epilepsy Foundation of Michigan (through information on their website and a targeted e-mail). Inclusion criteria were as follows: 13 to 17 years of age, a diagnosis of epilepsy or seizure disorder documented by a
Content
1 Facts about Epilepsy
2. Materials and methods
2.2. Intervention content
131
5 6
Definition of epilepsy and seizure; prevalence rates; causes and treatments for epilepsy; myths about epilepsy; lifestyle issues such as leisure activities, work, and driving; seizure first aid Recognizing Feelings and The connection between feelings, thoughts, and Feeling Management behaviors; recognizing stress; effects of stress on health; stress management; relaxation techniques Listening to Your Thoughts Becoming aware of physical reaction to feelings; identifying automatic thought patterns Thinking Traps Common thinking traps—frequent, believable repetitive thoughts; reframing negative thinking Attitudes and Actions that Coping and problem-solving; using logic and eviHelp dence to challenge automatic thoughts Practicing Skills Communication skills training; presentation on epilepsy to peers
neurologist in the medical record, a current prescription for an antiepileptic drug (AED), and ability to complete the questionnaires independently. Exclusion criteria were as follows: a diagnosis of intellectual disability by a neurologist or a psychologist noted in the medical record and/or full-time enrollment in special education classes. In addition, adolescents were excluded if their physician determined that they had severe mental health difficulties that would preclude their full participation in the group session. Adolescents and parents were not permitted to discuss their answers as they completed the surveys. Both adolescent assent and written parental informed consent were required, and both individuals needed to return completed questionnaires for inclusion in the analyses. 2.4. Instrument Participants' mental health was assessed using the Strengths and Difficulties Questionnaire (SDQ) [22]. The SDQ is a validated measure of mental health problems in children 4 to 17 years of age, which can be administered to parents, teachers, and to children 11 years of age or older. While it was originally validated in a British population, the SDQ was found to be an effective and efficient screen for child and adolescent mental health problems in the United States [23]. The SDQ consists of five scales of five items, which assess emotional symptoms, conduct problems, hyperactivity–inattention, peer relationship problems, and prosocial behavior, as well as questions about impairment and burden caused by the child's emotional or behavioral symptoms (impact score). The scale items were selected based on the DSM-IV [24] and International Classification of Diseases 10th Revision [25] classifications of childhood psychopathology. Questions asked about behavior in the past 6 months and responses are based on a 3-point Likert scale indicating how much each symptom item applies to the target child [22,26]. The 20 items relating to Emotional Symptoms, Conduct Problems, Hyperactivity, and Peer Problems are summed to create a “total difficulty score” ranging from 0 to 40. This score can also be classified as normal (low risk of mental health problems), borderline (possibly at risk of mental health problems), and abnormal (at risk of mental health problems) [22]. For the adolescents, the SDQ was administered prior to the intervention, immediately after the intervention, and four months after the intervention. The SDQ was administered separately to the parents prior to the intervention and again four months after the intervention. Since the group session was not designed to include parents, they were not surveyed immediately after the CBT group intervention. Sociodemographic and clinical data were gathered from the parents and the patients' clinical records. The parents' questionnaire also included questions about gender, relationship to the patient, marital status, number of siblings, educational status, and income. Additional data obtained included patients' age, age at epilepsy diagnosis, number of
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epilepsy-related medications, type(s) of seizure(s), epilepsy syndrome, and parents' report of their children's mental health diagnosis and/or psychiatric medications. 2.5. Statistical methods Descriptive statistics (t-tests and Pearson correlations) were computed on demographics, disease characteristics, and computed SDQ scores for all subjects who completed the questionnaire at baseline and at least one follow-up survey. Changes in SDQ scores from baseline were compared with demographic variables using Pearson correlations and t-tests. Strengths and Difficulties Questionnaire scores were compared across time using linear mixed models, controlling for family income and gender, with random effects for individual subjects. Adolescent and parent scores were compared at baseline and four-month follow-up using linear mixed models with a random intercept for parent/adolescent pair on raw scores. Parent–adolescent discordance was computed by taking the absolute value of the difference between subscale scores. Pearson correlations were calculated between parent–adolescent pairs' discordance scores and their individual SDQ subscale scores. 3. Results One hundred sixty adolescents, who met the eligibility criteria and expressed an interest in the project, and their parents were approached for participation in the study. Fifty-seven adolescents and their parents agreed to participate in the study. Forty-five adolescent/parent pairs completed the consent forms and first set of questionnaires. Eleven adolescents failed to show for the group (10 for the in-person group and 1 for the online group). There were no statistically significant differences in baseline demographics, epilepsy characteristics, or SDQ scores for the eleven pairs who consented but did not attend the CBT sessions compared with the thirty-four parent/adolescent pairs who ultimately completed the intervention and follow-up questionnaires. Twenty-five adolescents participated in the 1-day group session, while nine participated in the online program. There was no significant difference in the baseline SDQ scores between the group participants in either adolescent-reported or parent-reported scores. There were also no significant differences in family income or epilepsy characteristics; however 8 out of the 9 members of the online group were male. Demographic and clinical characteristics are summarized in Table 2. Table 2 Demographic characteristics of the study sample (n = 34). Variable Patient gender Male Female Age at seizure onset (mean, SD) Epilepsy type Focal Generalized Number of seizures in past 12 months Seizure-free b1 month 1–2 per month 3–4 per month 1 per week Daily Parent education Less than high school High school graduate Some college Bachelor's degree or higher Annual household income b$25,000 $25,000–$49,999 $50,000+
n (%)
We hypothesized that sociodemographic risk factors would have an impact on our subjects' results. Indeed, adolescents whose parents reported having less than a bachelor's degree education level reported significantly more improvement in Impact score compared with those whose parents had a bachelor's degree or higher (p = 0.01). Similarly, adolescents in the lowest income bracket (b$25,000/year) reported the greatest improvements in Impact score (p = 0.01) and Peer score (p = 0.02). Boys also reported more significantly improved Impact scores compared with girls (p = 0.019). Adolescents who participated in the weekly online group sessions reported more improvement in their Total SDQ scores (p = 0.037), Emotional Symptoms scores (0.029), and Conduct scores (0.014) compared with those who were in the in-person group, but there were more boys in the online group, and those analyses were not adjusted for multiple comparisons due to the small subgroup sample sizes. We adjusted all of the subsequently presented results for family income (which paralleled educational status) and gender based on these analyses. 3.1. Baseline SDQ scores Strengths and Difficulties Questionnaire subscale scores at baseline, immediately after the CBT group, and 4 months after the intervention are presented in Table 3. Baseline SDQ scores suggested that many participants were ‘possibly at risk’ (parent report = 14.3%, adolescent report = 6.3%) or ‘at risk’ (parent report = 32.1%, adolescent report = 21.9%) for mental health problems. At baseline, parents reported higher (worse) Peer Problems (p = 0.025) and Impact (p = 0.005) scores compared with their adolescent child on average (Table 4). We calculated discordance scores to further assess the degree of disagreement between parents and adolescents. Parents who reported higher SDQ subscale scores also had the most discordance with their adolescents' reported scores. Parents' baseline scores of Emotional (Pearson rho = 0.39, p = 0.027), Conduct (rho = 0.37, p = 0.042), Peer Relations (rho = 0.61, p b 0.001), and Impact (rho = 0 .82, p b 0.001) subscales were all positively correlated with parent–adolescent discordance. Adolescents' baseline Conduct score was also significantly correlated with discordance (rho = 0.79, p b 0.001). 3.2. Post-CBT intervention results The adolescent-reported Prosocial Behavior subscale scores had significantly different means across the three assessment points Table 3 Adolescent and parent-reported Strengths and Difficulties Questionnaire scores at baseline, immediately after the cognitive–behavioral therapy group, and four months later.
22 (64.7) 12 (35.3) 8.0 (4.6)
Score
22 (64.7) 11 (32.4)
Emotional symptoms Conduct problems Hyperactivity Peer problems Prosocial behavior Impact score Parent scores Total difficulties score Emotional symptoms Conduct problems Hyperactivity Peer problems Prosocial behavior Impact score
15 (44.1) 8 (23.5) 3 (8.8) 2 (5.9) 3 (8.8) 3 (8.8) 3 (8.8) 4 (11.8) 10 (29.4) 17 (50.0) 5 (14.7) 5 (14.7) 24 (70.6)
Adolescent scores Total difficulties score
Baseline, mean* (SE) 13.05 (1.2) 3.34 (0.43) 2.5 (0.35) 5.06 (0.50) 2.18 (0.32) 7.91 (0.29) 1.03 (0.26) 13.79 (1.25) 3.66 (0.47) 2.05 (0.38) 4.60 (0.48) 3.15 (0.41) 7.87 (0.37) 2.19 (0.34)
Immediate F/U, mean* (SE)
Four month F/U*, mean (SE)
p-value*
12.6 (1.2)
11.7 (1.2)
0.09
3.34 (0.43) 1.93 (0.35) 4.46 (0.50) 2.17 (0.32) 8.52 (0.29) 1.27 (0.27)
3.34 (0.43) 1.94 (0.35) 4.56 (0.50) 1.81 (0.32) 8.61 (0.30) 0.67 (0.27)
0.94 0.05 0.13 0.15 0.03 0.14
11.38 (1.23) 2.98 (0.47) 1.78 (0.37) 4.34 (0.48) 2.24 (0.41) 8.63 (0.37) 0.66 (0.34)
0.003 0.05 0.30 0.46 0.04 0.003 0.001
⁎ p-Value for adolescent comparisons from repeated measures ANOVA, parent comparisons from paired t-test. ⁎⁎ N b 34 because of incomplete questionnaire responses. Individual subscales with missing data were excluded from the analyses.
L. Carbone et al. / Epilepsy & Behavior 39 (2014) 130–134 Table 4 Strengths and Difficulties Questionnaire scores reported by adolescents versus their parents. Score
Adolescent, mean* (SE)
Parent, mean* (SE)
p–value**
Baseline Total difficulties score
12.53 (1.1)
13.22 (1.2)
0.53
Emotional symptoms
3.41 (0.4)
3.70 (0.4)
0.52
Conduct problems
2.27 (0.4)
1.73 (0.4)
0.13
Hyperactivity
4.99 (0.4)
4.61 (0.4)
0.32
Peer problems
2.00 (0.4)
2.92 (0.4)
0.025
Prosocial behavior
7.86 (0.33)
7.79 (0.33)
0.88
Impact score
0.91 (0.3)
2.0 (0.3)
0.005
Total difficulties score
10.9 (1.1)
10.3 (1.1)
Emotional symptoms
3.28 (0.4)
2.88 (0.4)
0.30
Conduct problems
1.75 (0.3)
1.47 (0.3)
0.30
Hyperactivity
4.38 (0.5)
4.28 (0.5)
0.84
Peer problems
1.53 (0.3)
2.03 (0.3)
0.06
Prosocial behavior Impact score
8.44 (0.3) 0.53 (0.2)
8.59 (0.3) 0.51 (0.2)
0.54 0.94
Four month follow–up 0.45
⁎ N b 34 because of incomplete questionnaire responses. Individual subscales with missing data were excluded from the analyses.
(p = 0.03). Post hoc Bonferroni-corrected comparisons confirmed that the adolescents reported significantly higher average Prosocial Behavior scores at the four-month follow-up assessment than at baseline (p = 0.03). None of the other adolescent-reported scores changed significantly across the three time points. Parent-reported scores were significantly improved at 4-month follow-up, compared with baseline, in Total Difficulties (p = 0.003) and Impact (p = 0.001) scores, as well as in Peer Problems (p = 0.04) and Prosocial Behavior (p = 0.003) scores (Table 3). Although parent-reported Impact and Peer Problems scores were significantly higher at baseline compared with adolescent-reported scores (p = 0.005 and p = 0.025), that difference had disappeared at follow-up. Compared with parents of adolescents with focal epilepsy syndromes, those whose children had generalized epilepsy reported significantly better improvement in Conduct scores (p = 0.007) and Total SDQ scores (p = 0.01). There were no other statistically significant differences at four-month follow-up. 4. Discussion We demonstrate here that a relatively brief CBT intervention, focused on epilepsy education, managing stress, changing negative thought patterns, as well as coping and problem-solving, was effective and resulted in improved mental health indices and social functioning for adolescents with epilepsy. These changes were immediately evident and lasted for at least 4 months after the intervention. Specifically, parent reports of mental health symptoms significantly improved over the 4-month period as shown by changes in Total Difficulties and Impact scores. Adolescent-reported Prosocial Behavior scores demonstrated significant positive improvements across the three assessment points. Importantly, adolescents from disadvantaged backgrounds appeared to benefit most from this intervention. Children of families in the lowest income brackets reported greater improvements in Peer Problems (p = 0.02) and Impact (p = 0.01) scores compared with those in families with the highest household incomes. Our findings add to the growing body of literature showing that a group intervention with psychoeducational and psychosocial treatment components is effective for adolescents with epilepsy [17–19,27–29]. Specifically analyzing demographic characteristics demonstrated that the most significant changes were in those from less advantaged and educated families, which was not reported in previous studies. Additionally, using the SDQ as a measure of mental health and social functioning is unique in the extant literature but provides rich information on parent/adolescent perceptions of how mental health difficulties
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impact social functioning in different settings. Parents reported a significant improvement in Total Difficulty and Impact scores from baseline to 4-month follow-up. Although small sample sizes limited robust comparisons between the in-person, single-day program and the online weekly program, both program designs appear to have been effective. Access to the online group allowed for participation of adolescents who live far away from our medical center. Every online participant was present for all of the weekly sessions. Fewer participants needed computer equipment from our lending library than we had anticipated. One adolescent had no computer and used a study-sponsored tablet to join the group. Another family had a computer, but it was in a hallway without privacy. A tablet was provided so that the adolescent could participate from the privacy of his bedroom. We reported previously, based on an independent cohort of patients, that adolescents and their parents provide discordant responses when asked about mental health difficulties [30]. This was recapitulated in the present study. At baseline, the parents appeared more pessimistic about their children's mental health and social functioning than adolescents' self-reports in the same areas. However, at follow-up, that difference had disappeared, with parent scores reflecting an improvement in their view of their children's mental health and social functioning. This occurred despite the fact that the CBT intervention did not involve the parents directly (they participated only in the first epilepsy education module). Health-related quality of life (QoL) research has shown that there is a lack of concordance between proxy and child reports of QoL, with proxy reports reporting a lower QoL compared with child reports [31–34]. Fathers and mothers of children with epilepsy rate QoL similarly but differently from the child [32]. The trend is for parents to rate QoL poorer than the self-rating of children. Our study parallels this with the mental health and social functioning measures in the SDQ. There is some concern that the subtle neurocognitive deficits that often accompany epilepsy make it more difficult for children with epilepsy to selfreport mood symptoms and social functioning [35,36]. Therefore, the inclusion of proxy reports for studies of children with epilepsy, along with the patients' self-reports, may be reasonable. Our study was strengthened by the use of validated mental health measures and a CBT program derived from a validated, published protocol [37]. We attempted to address the chronic issues of recruitment and retention in our design by having the intervention either in-person, on one day, or over the internet, weekly. Although our sample size was modest, it was comparable with, or greater than, cohort sizes in previously published studies [19,27,28,37,38]. We acknowledge that our study would have been strengthened by the inclusion of a control group of adolescents who did not attend the CBT groups. Future studies would be strengthened by a randomized controlled design. Finally, we measured mental health outcomes four months after the CBT intervention, but it was neither feasible nor practical to gather longer-term follow-up data. Despite these relative shortcomings, we demonstrated that a brief and focused CBT intervention resulted in significantly improved mental health indices for adolescents with epilepsy, especially among those from disadvantaged backgrounds. Previously published studies have had limitations, including small sample sizes, lack of control groups, difficulties with recruitment and retention, and lack of clearly defined intervention and outcome measures. The resource-intensive nature of CBT programs makes studying a larger cohort relatively costly from financial and staffing perspectives. Overcoming this obstacle is a universal challenge for the sustainability of this type of programming. A consistent and vexing problem is that the interventions are not sustainable once research funding expires. Mittan [27] concluded in 2009, “the development of psychosocial treatment programs in epilepsy has not kept pace with the development of medical treatments,” which is still true today. In our case, we were able to secure additional funding to partner with our state's Epilepsy Foundation to continue to provide a program to adolescents. If the program demonstrates continued success, the Foundation will consider adding it to their list of ongoing programs.
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5 . Conclusions Our results suggest that a group CBT intervention, coupled with epilepsy education, has an impact on several areas of the psychological, emotional, and social functioning of adolescents with epilepsy. Children who came from the most disadvantaged socioeconomic backgrounds seemed to benefit most. We hypothesize that a future program would likely be even more effective if it not only included the parents in the epilepsy education session but also had separate, but parallel, components for both adolescents and their parents on coping strategies and disease self-management. Addressing mental health difficulties and empowering adolescents to manage their epilepsy could optimize their long-term psychosocial outcomes. Acknowledgments This research was funded by a grant from the Michigan Department of Community Health and the University of Michigan Hospital Department of Social Work (38-6006309). We would like to extend our deepest appreciation to the children with epilepsy and their families who participated in this study. We also thank the physicians involved in the medical and psychosocial care of children with epilepsy at the University of Michigan Pediatric Neurology clinic. Conflict of interest The authors have no conflicts of interest to declare. References [1] Institute of Medicine Committee on the Public Health Dimensions of the Epilepsies. Epilepsy across the spectrum: promoting health and understanding. Special report. Washington, DC: IOM of the National Academies; 2012. [2] Austin J, Risinger M, Beckett L. Correlates of behavior problems in children with epilepsy. Epilepsia 1992;33(6):1115–22. [3] Russ S, Larson K, Halfon N. A national profile of childhood epilepsy and seizure disorder. Pediatrics 2012;129:256–64. [4] Ott D, Siddarth P, Gurbani S, Koh S, Tournay A, Shields WD, et al. Behavioral disorders in pediatric epilepsy: unmet psychiatric need. Epilepsia 2003;44(4):591–7. [5] Pianta R, Lothman D. Predicting behavior problems in children with epilepsy: child factors, disease factors, family stress, and child–mother interaction. Child Dev 1994;65(5):1415–28. [6] Rodenburg R, Meijer A, Dekovic M, Aldenkamp A. Family factors and psychopathology in children with epilepsy: a literature review. Epilepsy Behav 2006;6:488–503. [7] Jalava M, Sillanp M, Camfield C, Camfield P. Social adjustment and competence 35 years after onset of childhood epilepsy: a prospective controlled study. Epilepsia 1997;38(6):708–15. [8] Camfield C, Camfield P. Idiopathic generalized epilepsy with generalized tonic–clonic seizures: a population-based cohort with N20 year follow up for medical and social outcomes. Epilepsy Behav 2010;18:61–3. [9] Camfield C, Camfield P. Juvenile myoclonic epilepsy 25 years after seizure onset: a population based study. Neurology 2009;73:1041–5. [10] Camfield C, Camfield P. Transition to adult care for children with chronic neurological disorders. Ann Neurol 2011;69(3):437–44. [11] Sillanpaa M, Jalava M, Kleva O, Shinnar S. Long-term prognosis of seizures with onset in childhood. NEJM 1998;338(24):1715–22. [12] Wicksell R, Melin L, Lekander M, Olsson G. Evaluating the effectiveness of exposure and acceptance strategies to improve functioning and quality of life in long-standing pediatric pain. Pain 2008;141:248–57.
[13] Warner C, Reigada L, Fisher P, Saborsky A, Benkov K. CBT for anxiety and associated somatic complaints in pediatric medical settings: an open pilot study. J Clin Psychol Med Settings 2009;16:169–77. [14] Blocher J, Fujikawa M, Sung C, Jackson D, Jones J. Computer assisted cognitive behavioral therapy for children with epilepsy and anxiety: a pilot study. Epilepsy Behav 2013;27:70–6. [15] Bryant R, Moulds M, Guthrie R, Nixon R. Treating acute stress disorder following mild traumatic brain injury. Am J Psychiatry 2003;160(3):585–7. [16] Soo C, Tate RL. Psychological treatment for anxiety in people with traumatic brain injury. Cochrane Database Syst Rev 2007(3). http://dx.doi.org/10.1002/14651858. CD005239.pub2 [Art. No.:CD005239]. [17] Tieffenberg T, Wood E, Stat A, Tossutti M, Vicente M. A randomized field trial of ACINDES: a child-centered training model for children with chronic illnesses. J Urban Health 2000;7:280–97. [18] Gillam R. Refractory epilepsy: an evaluation of psychological methods in outpatient management. Epilepsia 1990;31:427–32. [19] Shore C, Perkins S, Austin J. The Seizures and Epilepsy Education (SEE) program for families of children with epilepsy: a preliminary study. Epilepsy Behav 2008;12: 157–64. [20] Goodman R. Psychometric properties of the Strengths and Difficulties Questionnaire. J Am Acad Child Adolesc Psychiatry 2001;40(11):1337–45. [21] Kendall P. Treating anxiety disorders in children: results of a randomized clinical trial. J Consult Clin Psychol 1994;62(1):100–10. [22] Goodman R, Renfrew D, Mullick M. Predicting type of psychiatric disorder from Strengths and Difficulties Questionnaire (SDQ) scores in child mental health clinics in London and Dhaka. Eur Child Adolesc Psychiatry 2000;9:129–34. [23] Bourdon K, Goodman R, Rae D, Simpson G, Koretz D. The Strengths and Difficulties Questionnaire: U.S. normative data and psychometric properties. J Am Acad Child Adolesc Psychiatry 2005;44(6):557–64. [24] American Psychiatric Association. DSM-IV: Diagnostic and Statistical Manual of Mental Disorders. Washington, DC: APA; 1994. [25] World Health Organization. The ICD-10 classification of mental and behavioural disorders: diagnostic criteria for research. Geneva, Switzerland: WHO; 1994. [26] Goodman R, Scott S. Comparing the Strengths and Difficulties Questionnaire and the Child Behavior Checklist: is small beautiful? J Abnorm Child Psychol 1999;27(1): 17–24. [27] Mittan R. Psychosocial treatment programs in epilepsy: a review. Epilepsy Behav 2009;16:371–80. [28] Wagner J, Smith G. Psychosocial intervention in pediatric epilepsy: a critique of the literature. Epilepsy Behav 2006;8:39–49. [29] Lewis M, Salas I, de la Sota A, Chiofalo N, Leake B. Randomized trial of a program to enhance the competencies of children with epilepsy. Epilepsia 1989;3(1):101–9. [30] Carbone L, Zebrack B, Plegue M, Joshi S, Shellhaas R. Treatment adherence among adolescents with epilepsy: what really matters? Epilepsy Behav 2013;27(1):59–63. [31] Cremeens J, Eiser C, Blades M. Factors influencing agreement between child selfreport and parent proxy-reports on the Pediatric Quality of Life Inventory™ 4.0 generic core scales. Health Qual Life Outcomes 2006;4:58–64. [32] Kroner-Herwig B, Morris L, Heinrich M, Gassman J, Vath N. Agreement of parents and children on characteristics of pediatric headache, other pains, symptomatic symptoms, and depressive symptoms in an epidemiologic study. Clin J Pain 2009; 25(1):58–64. [33] Upton P, Lawford J, Eiser C. Parent–child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res 2008;17:895–1913. [34] Ronen G, Streiner D. Rosenbaum, the Canadian Pediatric Epilepsy Network. Healthrelated quality of life in children with epilepsy: development and validation of selfreport and parent proxy measures. Epilepsia 2003;44(4):598–612. [35] Hermann B, Seidenberg M, Schoenfeld J, Davies K. Neuropsychological characteristics of the syndrome of medial temporal lobe epilepsy. Arch Neurol 1997;54:369–76. [36] Hermann B, Seidenberg M, Bell B, Rutecki P, Sheth R, Ruggles K, et al. The neurodevelopmental impact of childhood-onset temporal lobe epilepsy on brain structure and function. Epilepsia 2002;43(9):1062–71. [37] Austin J, McNelis A, Shore C, Dunne D, Musick B. A feasibility study of a family seizure management program: “be seizure smart”. J Neurosci Nurs 2002;34: 30–7. [38] Wagner J, Smith G, Ferguson P, van Bakergem K, Hrisko S. Pilot study of an integrated cognitive–behavioral and self-management intervention for youth with epilepsy and caregivers: Coping Openly and Personally with Epilepsy (COPE). Epilepsy Behav 2010;18:280–5.
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Improving the mental health of adolescents with epilepsy through a group cognitive behavioral therapy program Loretta Carbone a,⁎, Melissa Plegue b, Ashley Barnes c, Renée Shellhaas c a b c
Department of Social Work, University of Michigan Health System, Ann Arbor, MI, USA Center for Statistical Consultation and Research, University of Michigan, Ann Arbor, MI, USA Pediatrics & Communicable Diseases, University of Michigan Health System, Ann Arbor, MI, USA
a r t i c l e
i n f o
Article history: Received 25 April 2014 Revised 21 July 2014 Accepted 23 July 2014 Available online 18 September 2014 Keywords: Adolescent Cognitive behavioral therapy Epilepsy Mental health Survey Questionnaire Comorbidities
a b s t r a c t The threat of unpredictable seizures makes epilepsy unique among childhood chronic illnesses. One consequence is that people who have childhood-onset epilepsy often have poor social adjustment and competence in adulthood. Better emotional and social functioning could improve long-term outcomes. Thirty-four adolescents with epilepsy participated in a group cognitive behavioral therapy program designed to enhance their level of psychosocial functioning. Baseline Strength and Difficulty Questionnaire scores suggested that many participants had difficulties with emotions, concentration, and social functioning, with parent-reported Impact scores significantly worse than adolescent-reported scores (p = 0.005). Four months after the intervention, adolescentreported Prosocial Behavior scores significantly improved (p = 0.03). Parent-reported scores improved significantly at follow-up, compared with baseline, in Peer Problems (p = 0.04), Impact (p = 0.001), and Prosocial Behavior (p = 0.004) scores. Adolescents with lower socioeconomic status reported the greatest improvements (p = 0.01). A brief CBT intervention was effective and resulted in improved mental health indices and social functioning for adolescents with epilepsy. © 2014 Elsevier Inc. All rights reserved.
1. Introduction Beyond seizures, epilepsy has been increasingly recognized as a “spectrum disorder” which confers risk of negative outcomes in many aspects of the lives of children and their families [1]. These include important mental health comorbidities which impact the emotional, psychological, academic, and social well-being of affected children. Compared with healthy children, as well as children with other chronic illnesses, children with current epilepsy are more likely to experience depression, anxiety, attention deficit hyperactivity disorder (ADHD), behavioral problems, learning disability, developmental delay, and autism spectrum disorder [2,3]. Although more than 60% of children with epilepsy meet the criteria for a DSM-IV psychiatric diagnosis, fewer than half have access to mental health care [4]. Compared with children with other chronic illnesses, more children with epilepsy perceive events in their world as out of control [2,5,6]. One of the possible consequences of this perception is that adolescents who have childhood-onset epilepsy without other neurologic deficits will have poor social adjustment and competence in adulthood [7,8]. Even when seizures are well-controlled and the adolescent/young ⁎ Corresponding author at: Department of Social Work, 1500 E. Medical Center Dr., D2202 MPB, Ann Arbor, MI 48109-4279, USA. Tel.: +1 734 232 8896; fax: +1 734 936 9110. E-mail address: [email protected] (L. Carbone).
http://dx.doi.org/10.1016/j.yebeh.2014.07.024 1525-5050/© 2014 Elsevier Inc. All rights reserved.
adult has normal cognitive skills, suboptimal long-term social outcome is very common [7–10]. The risk of being unemployed or having disability is threefold higher among adults who had epilepsy diagnosed in childhood than healthy controls [7]. Adults with epilepsy have lower socioeconomic status, higher unemployment rates, and lower work placement than expected for level of training [7,11]. Interventions are urgently needed to avoid such adverse lifelong outcomes, to benefit affected individuals and their families, as well as to reduce financial pressures on government support programs, such as income and insurance programs for people who are disabled from working and/or poor. We hypothesized that participation in a group cognitive behavioral therapy (CBT) workshop would empower adolescents with epilepsy, thereby improving their social and emotional well-being. Cognitive behavioral therapy has been shown to benefit adolescents with negative thought patterns arising from a variety of causes, including chronic pain [12], anxiety, and associated somatic complaints [13] due to epilepsy [14] and anxiety and emotional adjustment related to traumatic brain injury [15,16]. Group-based formats have previously been demonstrated to improve knowledge and medical self-management as well as quality of life and depression, with trends toward improved social functioning [17–19]. The purpose of this study was to develop an intervention program based upon a CBT model designed to improve overall mental health and social functioning, as measured by the Strength and Difficulties Questionnaire (SDQ) Total Difficulties and Impact scores [20], adjusted
L. Carbone et al. / Epilepsy & Behavior 39 (2014) 130–134
for relevant medical and psychosocial variables. In addition to this primary outcome, we also aimed to evaluate the feasibility and effectiveness of an internet conference-based online peer group intervention compared with an in-person group session. Finally, we planned to evaluate the concordance of adolescents' and their parents' assessments of mental health and social impact of epilepsy.
Table 1 Group Intervention Content. Title
2
2.1. Intervention design
3
Coping with Epilepsy: A Group Program for Teens was developed by two of the authors (LC, a master's-prepared social worker and RS, a pediatric epileptologist) and was modeled on a published manual-based therapeutic intervention [21]. The groups were facilitated by two master's-prepared social workers, one of the authors and a second social worker who was trained to facilitate the group intervention. To enhance recruitment and retention, we offered the program in two formats. The first was a one-day (6-hour) workshop format for adolescents willing to come to an in-person group held at C.S. Mott Children's Hospital. Adolescents not able to come to the hospital due to distance or transportation issues participated in a weekly interactive web-based program. Parents consented to have their children participate in an online group after the risks inherent in internet contact were clearly communicated to them. The online group was held for 1 h weekly for 6 weeks, using a video conferencing and instant messaging application available for desktop, mobile devices, and tablets (ooVoo, New York, NY; the facilitator purchased a version of ooVoo without advertisements and initiated the call). Tablets were provided for adolescents who did not have access to a computer or a smartphone. Web cameras were provided for those in need of one. The first hour of each program addressed epilepsy education and was provided to the adolescents together with their parents. The adolescents participated independently in the rest of the modules. Parents were provided with a copy of the participant manual, but there was no other parent-focused intervention. This study was approved by the University of Michigan Institutional Review Board.
4
The CBT program consisted of six modules, designed with a mixture of interactive and didactic activities to maintain the adolescents' attention. We began with an interactive introductory activity which led into a didactic session on epilepsy. A team-building exercise was then followed by a presentation of CBT concepts, interspersed with interactive exercises related to the content. The content and exercises in the workbook were designed to provide the basic concepts of CBT with the overall goal of learning how to change negative thought patterns in order to interpret the environment in a less negative way, as well as to solidify the didactic learning through an exposure task. For the last module of the workshop, participants worked in small groups to prepare and provide a presentation about epilepsy to their peers. For the online group, individuals prepared a short presentation on epilepsy for the last group session. The goal of this final exercise was to parallel an “exposure” task to decrease adolescents' anxieties about talking about epilepsy with their peers. The workshop content is outlined in Table 1. Regular breaks, as well as lunch, were provided during the daylong in-person group sessions. 2.3. Participants Participants were recruited through the University of Michigan Health System Pediatric Neurology clinic, as well as the Epilepsy Foundation of Michigan (through information on their website and a targeted e-mail). Inclusion criteria were as follows: 13 to 17 years of age, a diagnosis of epilepsy or seizure disorder documented by a
Content
1 Facts about Epilepsy
2. Materials and methods
2.2. Intervention content
131
5 6
Definition of epilepsy and seizure; prevalence rates; causes and treatments for epilepsy; myths about epilepsy; lifestyle issues such as leisure activities, work, and driving; seizure first aid Recognizing Feelings and The connection between feelings, thoughts, and Feeling Management behaviors; recognizing stress; effects of stress on health; stress management; relaxation techniques Listening to Your Thoughts Becoming aware of physical reaction to feelings; identifying automatic thought patterns Thinking Traps Common thinking traps—frequent, believable repetitive thoughts; reframing negative thinking Attitudes and Actions that Coping and problem-solving; using logic and eviHelp dence to challenge automatic thoughts Practicing Skills Communication skills training; presentation on epilepsy to peers
neurologist in the medical record, a current prescription for an antiepileptic drug (AED), and ability to complete the questionnaires independently. Exclusion criteria were as follows: a diagnosis of intellectual disability by a neurologist or a psychologist noted in the medical record and/or full-time enrollment in special education classes. In addition, adolescents were excluded if their physician determined that they had severe mental health difficulties that would preclude their full participation in the group session. Adolescents and parents were not permitted to discuss their answers as they completed the surveys. Both adolescent assent and written parental informed consent were required, and both individuals needed to return completed questionnaires for inclusion in the analyses. 2.4. Instrument Participants' mental health was assessed using the Strengths and Difficulties Questionnaire (SDQ) [22]. The SDQ is a validated measure of mental health problems in children 4 to 17 years of age, which can be administered to parents, teachers, and to children 11 years of age or older. While it was originally validated in a British population, the SDQ was found to be an effective and efficient screen for child and adolescent mental health problems in the United States [23]. The SDQ consists of five scales of five items, which assess emotional symptoms, conduct problems, hyperactivity–inattention, peer relationship problems, and prosocial behavior, as well as questions about impairment and burden caused by the child's emotional or behavioral symptoms (impact score). The scale items were selected based on the DSM-IV [24] and International Classification of Diseases 10th Revision [25] classifications of childhood psychopathology. Questions asked about behavior in the past 6 months and responses are based on a 3-point Likert scale indicating how much each symptom item applies to the target child [22,26]. The 20 items relating to Emotional Symptoms, Conduct Problems, Hyperactivity, and Peer Problems are summed to create a “total difficulty score” ranging from 0 to 40. This score can also be classified as normal (low risk of mental health problems), borderline (possibly at risk of mental health problems), and abnormal (at risk of mental health problems) [22]. For the adolescents, the SDQ was administered prior to the intervention, immediately after the intervention, and four months after the intervention. The SDQ was administered separately to the parents prior to the intervention and again four months after the intervention. Since the group session was not designed to include parents, they were not surveyed immediately after the CBT group intervention. Sociodemographic and clinical data were gathered from the parents and the patients' clinical records. The parents' questionnaire also included questions about gender, relationship to the patient, marital status, number of siblings, educational status, and income. Additional data obtained included patients' age, age at epilepsy diagnosis, number of
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epilepsy-related medications, type(s) of seizure(s), epilepsy syndrome, and parents' report of their children's mental health diagnosis and/or psychiatric medications. 2.5. Statistical methods Descriptive statistics (t-tests and Pearson correlations) were computed on demographics, disease characteristics, and computed SDQ scores for all subjects who completed the questionnaire at baseline and at least one follow-up survey. Changes in SDQ scores from baseline were compared with demographic variables using Pearson correlations and t-tests. Strengths and Difficulties Questionnaire scores were compared across time using linear mixed models, controlling for family income and gender, with random effects for individual subjects. Adolescent and parent scores were compared at baseline and four-month follow-up using linear mixed models with a random intercept for parent/adolescent pair on raw scores. Parent–adolescent discordance was computed by taking the absolute value of the difference between subscale scores. Pearson correlations were calculated between parent–adolescent pairs' discordance scores and their individual SDQ subscale scores. 3. Results One hundred sixty adolescents, who met the eligibility criteria and expressed an interest in the project, and their parents were approached for participation in the study. Fifty-seven adolescents and their parents agreed to participate in the study. Forty-five adolescent/parent pairs completed the consent forms and first set of questionnaires. Eleven adolescents failed to show for the group (10 for the in-person group and 1 for the online group). There were no statistically significant differences in baseline demographics, epilepsy characteristics, or SDQ scores for the eleven pairs who consented but did not attend the CBT sessions compared with the thirty-four parent/adolescent pairs who ultimately completed the intervention and follow-up questionnaires. Twenty-five adolescents participated in the 1-day group session, while nine participated in the online program. There was no significant difference in the baseline SDQ scores between the group participants in either adolescent-reported or parent-reported scores. There were also no significant differences in family income or epilepsy characteristics; however 8 out of the 9 members of the online group were male. Demographic and clinical characteristics are summarized in Table 2. Table 2 Demographic characteristics of the study sample (n = 34). Variable Patient gender Male Female Age at seizure onset (mean, SD) Epilepsy type Focal Generalized Number of seizures in past 12 months Seizure-free b1 month 1–2 per month 3–4 per month 1 per week Daily Parent education Less than high school High school graduate Some college Bachelor's degree or higher Annual household income b$25,000 $25,000–$49,999 $50,000+
n (%)
We hypothesized that sociodemographic risk factors would have an impact on our subjects' results. Indeed, adolescents whose parents reported having less than a bachelor's degree education level reported significantly more improvement in Impact score compared with those whose parents had a bachelor's degree or higher (p = 0.01). Similarly, adolescents in the lowest income bracket (b$25,000/year) reported the greatest improvements in Impact score (p = 0.01) and Peer score (p = 0.02). Boys also reported more significantly improved Impact scores compared with girls (p = 0.019). Adolescents who participated in the weekly online group sessions reported more improvement in their Total SDQ scores (p = 0.037), Emotional Symptoms scores (0.029), and Conduct scores (0.014) compared with those who were in the in-person group, but there were more boys in the online group, and those analyses were not adjusted for multiple comparisons due to the small subgroup sample sizes. We adjusted all of the subsequently presented results for family income (which paralleled educational status) and gender based on these analyses. 3.1. Baseline SDQ scores Strengths and Difficulties Questionnaire subscale scores at baseline, immediately after the CBT group, and 4 months after the intervention are presented in Table 3. Baseline SDQ scores suggested that many participants were ‘possibly at risk’ (parent report = 14.3%, adolescent report = 6.3%) or ‘at risk’ (parent report = 32.1%, adolescent report = 21.9%) for mental health problems. At baseline, parents reported higher (worse) Peer Problems (p = 0.025) and Impact (p = 0.005) scores compared with their adolescent child on average (Table 4). We calculated discordance scores to further assess the degree of disagreement between parents and adolescents. Parents who reported higher SDQ subscale scores also had the most discordance with their adolescents' reported scores. Parents' baseline scores of Emotional (Pearson rho = 0.39, p = 0.027), Conduct (rho = 0.37, p = 0.042), Peer Relations (rho = 0.61, p b 0.001), and Impact (rho = 0 .82, p b 0.001) subscales were all positively correlated with parent–adolescent discordance. Adolescents' baseline Conduct score was also significantly correlated with discordance (rho = 0.79, p b 0.001). 3.2. Post-CBT intervention results The adolescent-reported Prosocial Behavior subscale scores had significantly different means across the three assessment points Table 3 Adolescent and parent-reported Strengths and Difficulties Questionnaire scores at baseline, immediately after the cognitive–behavioral therapy group, and four months later.
22 (64.7) 12 (35.3) 8.0 (4.6)
Score
22 (64.7) 11 (32.4)
Emotional symptoms Conduct problems Hyperactivity Peer problems Prosocial behavior Impact score Parent scores Total difficulties score Emotional symptoms Conduct problems Hyperactivity Peer problems Prosocial behavior Impact score
15 (44.1) 8 (23.5) 3 (8.8) 2 (5.9) 3 (8.8) 3 (8.8) 3 (8.8) 4 (11.8) 10 (29.4) 17 (50.0) 5 (14.7) 5 (14.7) 24 (70.6)
Adolescent scores Total difficulties score
Baseline, mean* (SE) 13.05 (1.2) 3.34 (0.43) 2.5 (0.35) 5.06 (0.50) 2.18 (0.32) 7.91 (0.29) 1.03 (0.26) 13.79 (1.25) 3.66 (0.47) 2.05 (0.38) 4.60 (0.48) 3.15 (0.41) 7.87 (0.37) 2.19 (0.34)
Immediate F/U, mean* (SE)
Four month F/U*, mean (SE)
p-value*
12.6 (1.2)
11.7 (1.2)
0.09
3.34 (0.43) 1.93 (0.35) 4.46 (0.50) 2.17 (0.32) 8.52 (0.29) 1.27 (0.27)
3.34 (0.43) 1.94 (0.35) 4.56 (0.50) 1.81 (0.32) 8.61 (0.30) 0.67 (0.27)
0.94 0.05 0.13 0.15 0.03 0.14
11.38 (1.23) 2.98 (0.47) 1.78 (0.37) 4.34 (0.48) 2.24 (0.41) 8.63 (0.37) 0.66 (0.34)
0.003 0.05 0.30 0.46 0.04 0.003 0.001
⁎ p-Value for adolescent comparisons from repeated measures ANOVA, parent comparisons from paired t-test. ⁎⁎ N b 34 because of incomplete questionnaire responses. Individual subscales with missing data were excluded from the analyses.
L. Carbone et al. / Epilepsy & Behavior 39 (2014) 130–134 Table 4 Strengths and Difficulties Questionnaire scores reported by adolescents versus their parents. Score
Adolescent, mean* (SE)
Parent, mean* (SE)
p–value**
Baseline Total difficulties score
12.53 (1.1)
13.22 (1.2)
0.53
Emotional symptoms
3.41 (0.4)
3.70 (0.4)
0.52
Conduct problems
2.27 (0.4)
1.73 (0.4)
0.13
Hyperactivity
4.99 (0.4)
4.61 (0.4)
0.32
Peer problems
2.00 (0.4)
2.92 (0.4)
0.025
Prosocial behavior
7.86 (0.33)
7.79 (0.33)
0.88
Impact score
0.91 (0.3)
2.0 (0.3)
0.005
Total difficulties score
10.9 (1.1)
10.3 (1.1)
Emotional symptoms
3.28 (0.4)
2.88 (0.4)
0.30
Conduct problems
1.75 (0.3)
1.47 (0.3)
0.30
Hyperactivity
4.38 (0.5)
4.28 (0.5)
0.84
Peer problems
1.53 (0.3)
2.03 (0.3)
0.06
Prosocial behavior Impact score
8.44 (0.3) 0.53 (0.2)
8.59 (0.3) 0.51 (0.2)
0.54 0.94
Four month follow–up 0.45
⁎ N b 34 because of incomplete questionnaire responses. Individual subscales with missing data were excluded from the analyses.
(p = 0.03). Post hoc Bonferroni-corrected comparisons confirmed that the adolescents reported significantly higher average Prosocial Behavior scores at the four-month follow-up assessment than at baseline (p = 0.03). None of the other adolescent-reported scores changed significantly across the three time points. Parent-reported scores were significantly improved at 4-month follow-up, compared with baseline, in Total Difficulties (p = 0.003) and Impact (p = 0.001) scores, as well as in Peer Problems (p = 0.04) and Prosocial Behavior (p = 0.003) scores (Table 3). Although parent-reported Impact and Peer Problems scores were significantly higher at baseline compared with adolescent-reported scores (p = 0.005 and p = 0.025), that difference had disappeared at follow-up. Compared with parents of adolescents with focal epilepsy syndromes, those whose children had generalized epilepsy reported significantly better improvement in Conduct scores (p = 0.007) and Total SDQ scores (p = 0.01). There were no other statistically significant differences at four-month follow-up. 4. Discussion We demonstrate here that a relatively brief CBT intervention, focused on epilepsy education, managing stress, changing negative thought patterns, as well as coping and problem-solving, was effective and resulted in improved mental health indices and social functioning for adolescents with epilepsy. These changes were immediately evident and lasted for at least 4 months after the intervention. Specifically, parent reports of mental health symptoms significantly improved over the 4-month period as shown by changes in Total Difficulties and Impact scores. Adolescent-reported Prosocial Behavior scores demonstrated significant positive improvements across the three assessment points. Importantly, adolescents from disadvantaged backgrounds appeared to benefit most from this intervention. Children of families in the lowest income brackets reported greater improvements in Peer Problems (p = 0.02) and Impact (p = 0.01) scores compared with those in families with the highest household incomes. Our findings add to the growing body of literature showing that a group intervention with psychoeducational and psychosocial treatment components is effective for adolescents with epilepsy [17–19,27–29]. Specifically analyzing demographic characteristics demonstrated that the most significant changes were in those from less advantaged and educated families, which was not reported in previous studies. Additionally, using the SDQ as a measure of mental health and social functioning is unique in the extant literature but provides rich information on parent/adolescent perceptions of how mental health difficulties
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impact social functioning in different settings. Parents reported a significant improvement in Total Difficulty and Impact scores from baseline to 4-month follow-up. Although small sample sizes limited robust comparisons between the in-person, single-day program and the online weekly program, both program designs appear to have been effective. Access to the online group allowed for participation of adolescents who live far away from our medical center. Every online participant was present for all of the weekly sessions. Fewer participants needed computer equipment from our lending library than we had anticipated. One adolescent had no computer and used a study-sponsored tablet to join the group. Another family had a computer, but it was in a hallway without privacy. A tablet was provided so that the adolescent could participate from the privacy of his bedroom. We reported previously, based on an independent cohort of patients, that adolescents and their parents provide discordant responses when asked about mental health difficulties [30]. This was recapitulated in the present study. At baseline, the parents appeared more pessimistic about their children's mental health and social functioning than adolescents' self-reports in the same areas. However, at follow-up, that difference had disappeared, with parent scores reflecting an improvement in their view of their children's mental health and social functioning. This occurred despite the fact that the CBT intervention did not involve the parents directly (they participated only in the first epilepsy education module). Health-related quality of life (QoL) research has shown that there is a lack of concordance between proxy and child reports of QoL, with proxy reports reporting a lower QoL compared with child reports [31–34]. Fathers and mothers of children with epilepsy rate QoL similarly but differently from the child [32]. The trend is for parents to rate QoL poorer than the self-rating of children. Our study parallels this with the mental health and social functioning measures in the SDQ. There is some concern that the subtle neurocognitive deficits that often accompany epilepsy make it more difficult for children with epilepsy to selfreport mood symptoms and social functioning [35,36]. Therefore, the inclusion of proxy reports for studies of children with epilepsy, along with the patients' self-reports, may be reasonable. Our study was strengthened by the use of validated mental health measures and a CBT program derived from a validated, published protocol [37]. We attempted to address the chronic issues of recruitment and retention in our design by having the intervention either in-person, on one day, or over the internet, weekly. Although our sample size was modest, it was comparable with, or greater than, cohort sizes in previously published studies [19,27,28,37,38]. We acknowledge that our study would have been strengthened by the inclusion of a control group of adolescents who did not attend the CBT groups. Future studies would be strengthened by a randomized controlled design. Finally, we measured mental health outcomes four months after the CBT intervention, but it was neither feasible nor practical to gather longer-term follow-up data. Despite these relative shortcomings, we demonstrated that a brief and focused CBT intervention resulted in significantly improved mental health indices for adolescents with epilepsy, especially among those from disadvantaged backgrounds. Previously published studies have had limitations, including small sample sizes, lack of control groups, difficulties with recruitment and retention, and lack of clearly defined intervention and outcome measures. The resource-intensive nature of CBT programs makes studying a larger cohort relatively costly from financial and staffing perspectives. Overcoming this obstacle is a universal challenge for the sustainability of this type of programming. A consistent and vexing problem is that the interventions are not sustainable once research funding expires. Mittan [27] concluded in 2009, “the development of psychosocial treatment programs in epilepsy has not kept pace with the development of medical treatments,” which is still true today. In our case, we were able to secure additional funding to partner with our state's Epilepsy Foundation to continue to provide a program to adolescents. If the program demonstrates continued success, the Foundation will consider adding it to their list of ongoing programs.
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5 . Conclusions Our results suggest that a group CBT intervention, coupled with epilepsy education, has an impact on several areas of the psychological, emotional, and social functioning of adolescents with epilepsy. Children who came from the most disadvantaged socioeconomic backgrounds seemed to benefit most. We hypothesize that a future program would likely be even more effective if it not only included the parents in the epilepsy education session but also had separate, but parallel, components for both adolescents and their parents on coping strategies and disease self-management. Addressing mental health difficulties and empowering adolescents to manage their epilepsy could optimize their long-term psychosocial outcomes. Acknowledgments This research was funded by a grant from the Michigan Department of Community Health and the University of Michigan Hospital Department of Social Work (38-6006309). We would like to extend our deepest appreciation to the children with epilepsy and their families who participated in this study. We also thank the physicians involved in the medical and psychosocial care of children with epilepsy at the University of Michigan Pediatric Neurology clinic. Conflict of interest The authors have no conflicts of interest to declare. References [1] Institute of Medicine Committee on the Public Health Dimensions of the Epilepsies. Epilepsy across the spectrum: promoting health and understanding. Special report. Washington, DC: IOM of the National Academies; 2012. [2] Austin J, Risinger M, Beckett L. Correlates of behavior problems in children with epilepsy. Epilepsia 1992;33(6):1115–22. [3] Russ S, Larson K, Halfon N. A national profile of childhood epilepsy and seizure disorder. Pediatrics 2012;129:256–64. [4] Ott D, Siddarth P, Gurbani S, Koh S, Tournay A, Shields WD, et al. Behavioral disorders in pediatric epilepsy: unmet psychiatric need. Epilepsia 2003;44(4):591–7. [5] Pianta R, Lothman D. Predicting behavior problems in children with epilepsy: child factors, disease factors, family stress, and child–mother interaction. Child Dev 1994;65(5):1415–28. [6] Rodenburg R, Meijer A, Dekovic M, Aldenkamp A. Family factors and psychopathology in children with epilepsy: a literature review. Epilepsy Behav 2006;6:488–503. [7] Jalava M, Sillanp M, Camfield C, Camfield P. Social adjustment and competence 35 years after onset of childhood epilepsy: a prospective controlled study. Epilepsia 1997;38(6):708–15. [8] Camfield C, Camfield P. Idiopathic generalized epilepsy with generalized tonic–clonic seizures: a population-based cohort with N20 year follow up for medical and social outcomes. Epilepsy Behav 2010;18:61–3. [9] Camfield C, Camfield P. Juvenile myoclonic epilepsy 25 years after seizure onset: a population based study. Neurology 2009;73:1041–5. [10] Camfield C, Camfield P. Transition to adult care for children with chronic neurological disorders. Ann Neurol 2011;69(3):437–44. [11] Sillanpaa M, Jalava M, Kleva O, Shinnar S. Long-term prognosis of seizures with onset in childhood. NEJM 1998;338(24):1715–22. [12] Wicksell R, Melin L, Lekander M, Olsson G. Evaluating the effectiveness of exposure and acceptance strategies to improve functioning and quality of life in long-standing pediatric pain. Pain 2008;141:248–57.
[13] Warner C, Reigada L, Fisher P, Saborsky A, Benkov K. CBT for anxiety and associated somatic complaints in pediatric medical settings: an open pilot study. J Clin Psychol Med Settings 2009;16:169–77. [14] Blocher J, Fujikawa M, Sung C, Jackson D, Jones J. Computer assisted cognitive behavioral therapy for children with epilepsy and anxiety: a pilot study. Epilepsy Behav 2013;27:70–6. [15] Bryant R, Moulds M, Guthrie R, Nixon R. Treating acute stress disorder following mild traumatic brain injury. Am J Psychiatry 2003;160(3):585–7. [16] Soo C, Tate RL. Psychological treatment for anxiety in people with traumatic brain injury. Cochrane Database Syst Rev 2007(3). http://dx.doi.org/10.1002/14651858. CD005239.pub2 [Art. No.:CD005239]. [17] Tieffenberg T, Wood E, Stat A, Tossutti M, Vicente M. A randomized field trial of ACINDES: a child-centered training model for children with chronic illnesses. J Urban Health 2000;7:280–97. [18] Gillam R. Refractory epilepsy: an evaluation of psychological methods in outpatient management. Epilepsia 1990;31:427–32. [19] Shore C, Perkins S, Austin J. The Seizures and Epilepsy Education (SEE) program for families of children with epilepsy: a preliminary study. Epilepsy Behav 2008;12: 157–64. [20] Goodman R. Psychometric properties of the Strengths and Difficulties Questionnaire. J Am Acad Child Adolesc Psychiatry 2001;40(11):1337–45. [21] Kendall P. Treating anxiety disorders in children: results of a randomized clinical trial. J Consult Clin Psychol 1994;62(1):100–10. [22] Goodman R, Renfrew D, Mullick M. Predicting type of psychiatric disorder from Strengths and Difficulties Questionnaire (SDQ) scores in child mental health clinics in London and Dhaka. Eur Child Adolesc Psychiatry 2000;9:129–34. [23] Bourdon K, Goodman R, Rae D, Simpson G, Koretz D. The Strengths and Difficulties Questionnaire: U.S. normative data and psychometric properties. J Am Acad Child Adolesc Psychiatry 2005;44(6):557–64. [24] American Psychiatric Association. DSM-IV: Diagnostic and Statistical Manual of Mental Disorders. Washington, DC: APA; 1994. [25] World Health Organization. The ICD-10 classification of mental and behavioural disorders: diagnostic criteria for research. Geneva, Switzerland: WHO; 1994. [26] Goodman R, Scott S. Comparing the Strengths and Difficulties Questionnaire and the Child Behavior Checklist: is small beautiful? J Abnorm Child Psychol 1999;27(1): 17–24. [27] Mittan R. Psychosocial treatment programs in epilepsy: a review. Epilepsy Behav 2009;16:371–80. [28] Wagner J, Smith G. Psychosocial intervention in pediatric epilepsy: a critique of the literature. Epilepsy Behav 2006;8:39–49. [29] Lewis M, Salas I, de la Sota A, Chiofalo N, Leake B. Randomized trial of a program to enhance the competencies of children with epilepsy. Epilepsia 1989;3(1):101–9. [30] Carbone L, Zebrack B, Plegue M, Joshi S, Shellhaas R. Treatment adherence among adolescents with epilepsy: what really matters? Epilepsy Behav 2013;27(1):59–63. [31] Cremeens J, Eiser C, Blades M. Factors influencing agreement between child selfreport and parent proxy-reports on the Pediatric Quality of Life Inventory™ 4.0 generic core scales. Health Qual Life Outcomes 2006;4:58–64. [32] Kroner-Herwig B, Morris L, Heinrich M, Gassman J, Vath N. Agreement of parents and children on characteristics of pediatric headache, other pains, symptomatic symptoms, and depressive symptoms in an epidemiologic study. Clin J Pain 2009; 25(1):58–64. [33] Upton P, Lawford J, Eiser C. Parent–child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res 2008;17:895–1913. [34] Ronen G, Streiner D. Rosenbaum, the Canadian Pediatric Epilepsy Network. Healthrelated quality of life in children with epilepsy: development and validation of selfreport and parent proxy measures. Epilepsia 2003;44(4):598–612. [35] Hermann B, Seidenberg M, Schoenfeld J, Davies K. Neuropsychological characteristics of the syndrome of medial temporal lobe epilepsy. Arch Neurol 1997;54:369–76. [36] Hermann B, Seidenberg M, Bell B, Rutecki P, Sheth R, Ruggles K, et al. The neurodevelopmental impact of childhood-onset temporal lobe epilepsy on brain structure and function. Epilepsia 2002;43(9):1062–71. [37] Austin J, McNelis A, Shore C, Dunne D, Musick B. A feasibility study of a family seizure management program: “be seizure smart”. J Neurosci Nurs 2002;34: 30–7. [38] Wagner J, Smith G, Ferguson P, van Bakergem K, Hrisko S. Pilot study of an integrated cognitive–behavioral and self-management intervention for youth with epilepsy and caregivers: Coping Openly and Personally with Epilepsy (COPE). Epilepsy Behav 2010;18:280–5.
