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Illness perceptions determine psychological distress and quality of life in youngsters with epilepsy
Epilepsy & Behavior 46 (2015) 144–150
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Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Illness perceptions determine psychological distress and quality of life in youngsters with epilepsy Ioanna Rizou a,⁎, Veronique De Gucht b,1, Antigone Papavasiliou c,2, Stan Maes b,1 a b c
Child Psychiatry Department, Mental Health Center of General Hospital of Athens “G. Gennimatas”, Athens, Greece Health, Medical and Neuropsychology Department, Leiden University, Leiden, The Netherlands Child Neurology Department, Pendeli Children's Hospital, Athens, Greece
a r t i c l e
i n f o
Article history: Received 22 February 2015 Revised 19 March 2015 Accepted 21 March 2015 Available online 19 April 2015 Keywords: Epilepsy Children Adolescents Distress Quality of life Self-regulation Illness perceptions
a b s t r a c t The aim of this cross-sectional study was to explore the extent to which gender, epilepsy severity, and selfregulation concepts (illness perceptions, autonomous treatment regulation, perceived autonomy support by parents) predict psychological distress and quality of life (QoL) in young patients with epilepsy. Structured interviews were conducted in 100 patients (Mage = 13.9, SD = 2.21, 41% girls), and data were analyzed by means of multiple hierarchical regression analyses. Seizures of most patients (91%) were well controlled by antiepileptics, 3% of the patients had infrequent seizures, and seizures in 6% were pharmacoresistant. At a multivariate level, it appeared that youngsters with epilepsy who expect that their disease will last for a long time, who believe that they have less personal control over their illness, and who expect the illness to have a high emotional impact reported higher levels of distress. In addition, a better QoL was reported by youngsters who believed that treatment did not control their illness and who thought that their epilepsy would not affect them emotionally. Findings indicate the importance of illness perceptions, and it is suggested that they should be targeted in future interventions in youngsters with epilepsy. © 2015 Elsevier Inc. All rights reserved.
1. Introduction To date, research on determinants of psychological distress and quality of life in children and adolescents suffering from epilepsy has focused mainly on: 1) disease characteristics (e.g., severity, illness duration, frequency of seizures, nature of symptoms, side effects of drugs), 2) characteristics of the adolescent (e.g., age, gender, levels of autonomy, locus of control), and 3) characteristics of the family (e.g., parenting style, problem-solving abilities) [1–5]. It is remarkable that many studies have investigated relatively stable disease, personal and family characteristics as determinants of distress, and quality of life rather than perceptions, attitudes, or skills of patients that can be more easily influenced by means of interventions [6]. For this reason, we aimed to explore, apart from demographic and disease characteristics, the role of more malleable determinants such as youngster's illness perceptions, autonomous motivation towards treatment, and parent's autonomy supportiveness on psychological distress and quality of life of youngsters with epilepsy. There is indeed increasing evidence that changing
⁎ Corresponding author at: 4 Agelon Street, Neo Irakleio 14121, Athens, Greece. Tel.: +30 6945461024. E-mail address: [email protected] (I. Rizou). 1 Pieter de la Court gebouw, Wassenaarseweg 52, 2333 AK Leiden, The Netherlands. 2 8 Mandelara Street, Nea Erythraia 14671, Athens, Greece.
http://dx.doi.org/10.1016/j.yebeh.2015.03.022 1525-5050/© 2015 Elsevier Inc. All rights reserved.
illness and treatment perceptions has a beneficial impact on psychological distress and quality of life [6,7]. 1.1. A self-regulation perspective to psychological distress and quality of life in youth with epilepsy Psychological distress is mostly defined as a state of emotional suffering characterized by symptoms of depression and anxiety [8]. It can be considered a “normal” emotional reaction to a stressor, but can satisfy diagnostic criteria for a psychiatric disorder if accompanied by other symptoms [9]. Quality of life is defined as “an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is incorporating individuals' physical health, psychological state, level of independence, social relationships, personal beliefs, and their relationships to salient features of the environment” [10]. The above concepts are not only multidimensional, but also constantly changing. Preadolescence and adolescence are characterized by important biological, psychological, and social transitions. During these periods, independence, individuality, and freedom become increasingly important, and a chronic disease, such as epilepsy, can seriously interfere with development [1,11–15]. Youngsters suffering from epilepsy frequently report not being in control of their lives and feeling as if they have lost their freedom, leading to higher levels of depression and anxiety (psychological distress) as well as lower levels of
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quality of life [1,16–20]. The experience of lack of control, autonomy, and freedom can be approached from a self-regulation perspective. Self-regulation theories are centered on the idea that all behavior is goal-directed and that cognitions and skills play an important role in personal goal attainment. Illness cognitions, autonomous versus coerced regulation, and autonomy supportiveness are important concepts from this perspective [21].
1.2. Illness perceptions Illness perceptions can be defined as patients' beliefs and expectations about their illness (or a specific symptom) [22,23]. Important attributes of illness perceptions are according to Leventhal's self-regulation theory: identity (the name or label given to the illness or symptoms), timeline (the perceived time trajectory of the illness), consequences (the expected future effects and outcomes of the illness), cause (the supposed etiology of the illness), and cure or control (the extent to which the patients believe that they may recover or have personal control over the illness). Finally, emotional representations of the illness incorporate anticipated negative emotional reactions such as anger, fear, and distress due to the presence of the disease [24,25]. Research in children and adolescents with epilepsy shows that some may be resilient and/or accepting, while others believe that everything is under control [26] or have important concerns regarding prognosis and are concerned about the consequences of poor adherence to treatment because of possible seizures [5]. Despite this, very few studies investigate their role of illness perceptions based on a solid psychological framework [26–28].
1.3. Treatment self-regulation Self-regulation is initiated when a selection or activation of a particular goal (either conscious or unconscious) occurs. According to Deci and Ryan's (2000) Self-Determination Theory (SDT), autonomous regulation occurs when a goal is considered to be important for the person and is chosen by himself, whereas in the case of controlled regulation, other people set the goal, or there is pressure to attain this goal by external forces [21,29–31]. Research in adults suffering from various chronic diseases showed that medication adherence is positively related to patients' autonomous motivation [21,32].
1.4. Parent's autonomy supportiveness Parenting style is of great importance to the development and wellbeing of all adolescents, but especially to youngsters suffering from a chronic illness [2,4]. Young people whose parents are less flexible and overprotective may have poorer treatment compliance and, thereby, poorer seizure control. Parents who try to give their children progressively more control over their own illness are more autonomy supportive [4,33–36]. Autonomous regulation may have beneficial consequences in terms of stress and wellbeing if the parents support autonomous regulation of the youngsters suffering from epilepsy [29]. This study explores whether, after controlling for gender and disease severity, these self-regulation constructs do explain important parts of the variance in psychological distress and quality of life in youngsters with epilepsy. More specifically, we expect that: 1) female gender and disease severity will be positively related to psychological distress and negatively related to quality of life, 2) perceptions of control will be negatively related to psychological distress and positively related to quality of life, while all other illness cognitions will show an opposite relationship, and 3) both autonomous regulation and autonomy supportiveness will be negatively related to psychological distress and positively related to quality of life.
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2. Material and methods 2.1. Study design and patient recruitment Patients were recruited from the Epilepsy Clinic of the Paediatric Neurology Department of Pendeli Children's Hospital, which treats children and adolescents with epilepsy from the Athens metropolitan area but also accepts referrals from the whole of Greece. The present study served as the cornerstone for the development of an intervention program and was approved by the Ethical Research Committee of Pendeli Children's Hospital. Participants were recruited between March 2009 and January 2012 according to the following inclusion criteria: 1) age: 10–18 years old, 2) at least one epileptic seizure during the preceding year, 3) normal IQ, 4) no other chronic illness, physical disability, or mental disorder, 5) no surgical procedures during the preceding year, and 6) no medication change in the last 6 months. Four hundred medical records of youngsters consecutively examined at the Epilepsy Clinic were reviewed for their eligibility for the study. After examination of the medical records by the neurologist, 200 youngsters who fulfilled the inclusion criteria were approached during their prescheduled visits. Initially, parents were informed about the goals and procedures of the study by the treating neurologist. Subsequently a meeting with the parents and the young patient was planned to explain the study in more detail. The first 100 of them who agreed to participate signed informed consents and were included in the study. Next, all questionnaires were completed by the patient, without presence of the parents, in the context of an interview. The interviewer did not know any of the patients prior to this meeting and always asked the exact same questions of following a protocol. The interview lasted approximately 60 to 70 min. 2.2. Measures 2.2.1. Disease characteristics Data regarding disease characteristics were derived from the medical records and included type of epilepsy, duration, age of onset, time of last seizure, total number of seizures, and medication. The severity of epilepsy was evaluated on an ordinal scale with 6 categories. Starting from the least severe epilepsy, the categories were: 1) benign focal childhood epilepsy, 2) idiopathic generalized epilepsy, 3) epilepsy well controlled by medication but with unknown prognosis (unknown etiology of epilepsy), 4) symptomatic epilepsy with adequate response to medication (more than 6 months seizure free), 5) symptomatic epilepsy with moderate response to medication (less than 6 months seizure free), and 6) pharmacoresistance (failure to respond to at least 3 appropriately selected antiepileptics) [37]. In the present study, this severity scale was used in the analyses with lower scores indicating less severe epilepsy. All data, except for disease characteristics, were obtained by means of the following questionnaires: 2.2.2. Illness perceptions 2.2.2.1. Brief Illness Perceptions Questionnaire (BIPQ) [24]. Eight items measure cognitive illness representations (consequences, timeline, identity, personal, and treatment control) and emotional representations (concern and emotion) while there is also an item asking the patient to mention the factors that, according to his/her opinion, caused the illness. A 10-point Likert scale is used with lower scores indicating more beneficial perceptions (i.e., for timeline: 0 = my epilepsy will last for a very short time to 10 = it will last forever), except for coherence and personal and treatment control, where higher scores represent more beneficial perceptions. In order to compute the total score, the
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scores of these items are reversed and, therefore, in all items a lower score reflects a less threatening view of the illness. 2.2.3. Autonomous treatment self-regulation 2.2.3.1. Treatment Self-Regulation Questionnaire (TSRQ) [38]. The TSRQ questionnaire was adapted for the present study to measure whether the patient's motivation for treatment adherence was autonomous (3 items) or controlled (7 items). Each item was rated on a 7-point Likert scale (where 1 = not true at all and 7 = very true). The items with regard to autonomous regulation were added up and divided by 7, resulting in the final score for autonomous treatment regulation. The scores of the 7 items concerning controlled regulation were also added up and divided by 7, resulting in the final score for controlled treatment regulation. By subtracting the Z-score for controlled regulation from the Z-score for autonomous regulation, a combined score for the treatment regulatory style was calculated, with higher scores indicating a more autonomous style, with low scores indicating more controlled regulation.
on the findings of the preliminary analyses, separate multiple hierarchical regression analyses were conducted for each outcome. Both for psychological distress and quality of life in the first block, gender was entered in the analysis (model 1). In the second block, severity was entered (model 2). In the third block, illness perceptions were added (model 3). 3. Results 3.1. Patients The 100 participants in our study had a mean age of 13.9 years (SD = 2.21) and 59% of them were boys. Regarding epilepsy severity, 6% of these patients fulfilled criteria for pharmacoresistance, 3% had less than 6 months seizure freedom (symptomatic epilepsy with moderate response to medication), 24% were more than 6 months seizure free (symptomatic epilepsy with adequate response to medication), 14% had seizures that were well controlled by medication but with unknown prognosis, 30% had idiopathic generalized epilepsy, and 23% had benign focal childhood epilepsy.
2.2.4. Autonomy support by parents 3.2. Preliminary analyses 2.2.4.1. Perceptions of Parents Scales (POPS) [39]. The POPS assesses children's perceptions of the degree to which their parents are autonomy supportive and involved. Involvement concerns devoting resources to their children, meaning, being available to them, knowledgeable about their lives, and concerned about what is going on with them. Thus, mothers and fathers each get a score on the degree to which they are perceived as autonomy supportive and involved with their children. The original questionnaire has 22 items (11 for the mothers and the same 11 items for the fathers), but for the present study we used 11 items (by replacing the words “mother/father” with the word “parents”). The remaining items formed the autonomy support subscale (6 items) and the involvement subscale (5 items). For every item, participants have to choose one out of four descriptions of parents that most resembled their parents.
3.2.1. Psychological distress The Pearson's correlations between psychological distress and the predictors revealed significant associations, with the exception of severity, coherence, autonomous treatment regulation, and autonomy supportiveness by parents (Table 1). For this reason, coherence, autonomous treatment regulation, and autonomy supportiveness by parents were not included as predictors in the regression analysis. 3.2.2. Quality of life Quality of life was significantly associated with many predictors except with autonomous treatment regulation and autonomy supportiveness by parents (Table 1). As the correlation with coherence was, however, weak, we also did not enter coherence as a predictor in the regression analysis.
2.2.5. Psychological distress 3.3. Hierarchical regression analyses 2.2.5.1. Revised Children's Anxiety and Depression Scale (RCADS) [40]. This questionnaire consists of 47 items with 4 answer categories (“never”, “sometimes”, “often” and “always”) and measures: 1) separation anxiety, 2) generalized anxiety, 3) panic, 4) social phobia, 5) obsessions/ compulsions, 6) depression, 7) total anxiety, and 8) total anxiety and depression (psychological distress). In the present study, we used only the total psychological distress (anxiety and depression) score with higher scores indicating more psychological distress.
3.3.1. Predicting psychological distress The results of the hierarchical regression analysis with psychological distress as the dependent variable are shown in Table 2. The final model (model 3: R2 = 0.436, adjusted R2 = 0.379, F = 7.716, df = 9, P b 0.001) suggested that believing that epilepsy will last for a long time, feeling that one has less personal control over one's disease, believing that treatment can help, and feeling that epilepsy will have a high emotional impact predict higher levels of distress.
2.2.6. Quality of life 2.2.6.1. KIDSCREEN-27 [41,42]. The KIDSCREEN-27 questionnaire consists of 27 items used to assess health-related quality of life across 5 dimensions: physical well-being (5 items), psychological well-being (7 items), parent relations and autonomy (7 items), social support and peers (4 items), and school environment (4 items). Items are rated on a 5-point scale (1 = never and 5 = always) within the timeframe of one week. Scores are computed for each dimension using the person's estimation based on a Rasch model. For the purpose of the present study, only the total score was used. 2.3. Data analysis With respect to the patient characteristics, categorical data were described as numbers and percentages. Initially, preliminary analyses were carried out, using Pearson's correlations, in order to examine the univariate relationships between all the variables used. Second, based
3.3.2. Predicting quality of life As presented in Table 3, in our final model (model 3: R2 = 0.366, adjusted R2 = 0.303, F = 5.77, df = 9, P b 0.001), treatment control and emotional representation were the only significant predictors of quality of life. The final model suggested that not believing that treatment will control the illness and believing that epilepsy will have no big emotional impact predict a better quality of life. 4. Discussion The main findings of this study suggest that illness perceptions do predict psychological distress and quality of life, but that autonomous treatment regulation and perceived autonomy support by parents had no predictive power. Not all illness perceptions appeared, however, to be significant predictors of psychological distress and quality of life. Psychological distress is predicted by timeline, personal control, treatment control, and emotional representation. Quality of life, on the
Table 1 Pearson's correlations between all variables. Gender
Severity
Consequences Timeline
0.368⁎⁎ 0.000 0.343⁎⁎ 0.000 0.649⁎⁎ 0.000 1 0.460⁎⁎ 0.000 0.376⁎⁎ 0.000 0.439⁎⁎ 0.000 0.696⁎⁎ 0.000 0.396⁎⁎ 0.000 0.461⁎⁎ 0.000 −0.102 0.314 −0.002 0.982 0.534⁎⁎ 0.000 −0.478⁎⁎ 0.000
Treatment control
Identity
0.210⁎ 0.036 0.370⁎⁎ 0.000 0.364⁎⁎ 0.000 0.460⁎⁎
0.026 0.800 0.252⁎ 0.011 0.322⁎⁎ 0.001 0.376⁎⁎
0.264⁎⁎ 0.008 0.210⁎ 0.036 0.394⁎⁎ 0.000 0.439⁎⁎
0.000 1
0.000 0.830⁎⁎ 0.000 1
0.000 0.469⁎⁎ 0.000 0.417⁎⁎ 0.000 1
0.830⁎⁎ 0.000 0.469⁎⁎ 0.000 0.427⁎⁎
Concern
Coherence
Emotional Autonomous Perceived autonomy Distress representation treatment support by parents regulation
0.357⁎⁎ −0.010 0.000 0.918 0.235⁎ 0.221⁎ 0.018 0.027 0.603⁎⁎ 0.436⁎⁎ 0.000 0.000 0.696⁎⁎ 0.396⁎⁎ 0.000 0.000 0.427⁎⁎ 0.307⁎⁎
0.355⁎⁎ 0.000 0.207⁎ 0.039 0.749⁎⁎ 0.000 0.461⁎⁎
0.000 0.362⁎⁎ 0.000 0.605⁎⁎ 0.000 1
0.000 0.204⁎ 0.041 0.559⁎⁎ 0.000 0.574⁎⁎
0.002 0.322⁎⁎ 0.001 0.470⁎⁎ 0.000 0.508⁎⁎
0.417⁎⁎ 0.000 0.362⁎⁎ 0.605⁎⁎ 0.000 0.000 0.000 0.000 0.307⁎⁎ 0.322⁎⁎ 0.470⁎⁎ 0.508⁎⁎ 1 0.002 0.001 0.000 0.000 0.366⁎⁎ 0.204⁎ 0.559⁎⁎ 0.574⁎⁎ 0.312⁎⁎ 0.000 0.041 0.000 0.000 0.002 0.041 0.007 −0.180 −0.205⁎ −0.061 0.687 0.946 0.074 0.041 0.548 0.108 0.060 0.101 −0.034 −0.011 0.286 0.550 0.316 0.738 0.915 0.214⁎ 0.233⁎ 0.411⁎⁎ 0.549⁎⁎ 0.188 0.032 0.020 0.000 0.000 0.061 ⁎⁎ ⁎⁎ ⁎⁎ ⁎⁎ −0.319 −0.336 −0.400 −0.522 −0.210⁎ 0.001 0.001 0.000 0.000 0.036
0.000 0.366⁎⁎
0.000 0.312⁎⁎ 0.002 1 −0.163 0.104 −0.078 0.443 0.447⁎⁎ 0.000 −0.422⁎⁎ 0.000
−0.078 0.439 −0.125 0.215 −0.276⁎⁎ 0.005 −0.102 0.314 0.041 0.687 0.007 0.946 −0.180 0.074 −0.205⁎ 0.041 −0.061 0.548 −0.163 0.104 1 0.140 0.164 −0.058 0.563 −0.065 0.519
0.083 0.412 0.054 0.592 −0.093 0.358 −0.002 0.982 0.108 0.286 0.060 0.550 0.101 0.316 −0.034 0.738 −0.011 0.915 −0.078 0.443 0.140 0.164 1 0.030 0.771 −0.010 0.918
Quality of life
0.359⁎⁎ 0.000 0.090 0.375 0.414⁎⁎ 0.000 0.534⁎⁎
−0.280⁎⁎ 0.005 −0.203⁎ 0.043 −0.388⁎⁎ 0.000 −0.478⁎⁎
0.000 0.214⁎ 0.032 0.233⁎ 0.020 0.411⁎⁎ 0.000 0.549⁎⁎
0.000 −0.319⁎⁎ 0.001 −0.336⁎⁎ 0.001 −0.400⁎⁎ 0.000 −0.522⁎⁎
0.000 0.188 0.061 0.447⁎⁎ 0.000 −0.058 0.563 0.030 0.771 1
0.000 −0.210⁎ 0.036 −0.422⁎⁎ 0.000 −0.065 0.519 −0.010 0.918 −0.772⁎⁎ 0.000 −0.772⁎⁎ 1 0.000
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R 1 0.023 0.288⁎⁎ Sig 0.817 0.004 Severity R 0.023 1 0.238⁎ Sig 0.817 0.017 Consequences R 0.288⁎⁎ 0.238⁎ 1 Sig 0.004 0.017 Timeline R 0.368⁎⁎ 0.343⁎⁎ 0.649⁎⁎ Sig 0.000 0.000 0.000 Personal control R 0.210⁎ 0.370⁎⁎ 0.364⁎⁎ Sig 0.036 0.000 0.000 Treatment control R 0.026 0.252⁎ 0.322⁎⁎ Sig 0.800 0.011 0.001 Identity R 0.264⁎⁎ 0.210⁎ 0.394⁎⁎ Sig 0.008 0.036 0.000 Concern R 0.357⁎⁎ 0.235⁎ 0.603⁎⁎ Sig 0.000 0.018 0.000 Coherence R −0.010 0.221⁎ 0.436⁎⁎ Sig 0.918 0.027 0.000 Emotional representation R 0.355⁎⁎ 0.207⁎ 0.749⁎⁎ Sig 0.000 0.039 0.000 Autonomous treatment regulation R −0.078 −0.125 −0.276⁎⁎ Sig 0.439 0.215 0.005 Perceived autonomy support by parents R 0.083 0.054 −0.093 Sig 0.412 0.592 0.358 0.414⁎⁎ Distress R 0.359⁎⁎ 0.090 Sig 0.000 0.375 0.000 Quality of life R −0.280⁎⁎ −0.203⁎ −0.388⁎⁎ Sig 0.005 0.043 0.000 Gender
Personal control
⁎⁎ Correlation is significant at the 0.01 level. ⁎ Correlation is significant at the 0.05 level.
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Table 2 Summary of hierarchic regression analysis for variables associated with distress of youth with epilepsy. Model 1
Gender Severity IP-consequences IP-timeline IP-personal control IP-treatment control IP-identity IP-concern IP-emotional representation
Model 2
Model 3
B (β)
SE B
P
B (β)
SE B
P
B (β)
SE B
P
8.384 (0.359)
2.203
0.000
8.340 (0.357) 0.683 (0.081)
2.207 0.792
0.000 0.391
3.791 (0.162) −0.430 (−0.051) −0.735 (−0.211) 1.474 (0.375) −2.258 (−0.423) 2.225 (0.362) 0.173 (0.035) 0.885 (0.211) 1.232 (0.325)
2.155 0.748 0.523 0.518 0.894 0.985 0.569 0.543 0.560
0.082 0.566 0.164 0.005 0.013 0.026 0.761 0.107 0.030
Model 1: R2 = 0.129, adjusted R2 = 0.120, F = 14.49, df = 1, P b 0.001. Model 2: R2 = 0.135, adjusted R2 = 0.118, F = 7.59, df = 2, P b 0.01. Model 3: R2 = 0.436, adjusted R2 = 0.379, F = 7.71, df = 9, P b 0.001.
other hand, is predicted by treatment control and emotional representation. In contrast to previous research, this study was based on a selfregulation theory. In addition, the strict inclusion criteria excluded possible effects due to comorbidity. As such, this study is novel, but at the same time, it is difficult to compare its results with the results of previous studies. Coherence, autonomous treatment regulation, and autonomy supportiveness by parents were not significantly related to psychological distress and quality of life and were, therefore, excluded from both regression analyses. The lack of relationship between autonomous regulation and autonomy supportiveness, on the one hand, and psychological distress, on the other hand, is possibly due to the age range of the respondents. Autonomous treatment regulation is known to increase with age as well as autonomy supportiveness by parents. The same applies to the relationship with quality of life. Future studies should explore this developmental hypothesis. The fact that the illness perceptions questionnaire includes the dimensions of personal and treatment control allows, however, the further exploration of the role of personal or external control over the illness. The final multiple regression model with psychological distress as an outcome suggests that young patients who believe that their epilepsy will last longer, feel that they have less personal control over their epilepsy, believe that treatment controls the disease, and expect epilepsy to have more emotional impact suffer from higher levels of psychological distress. The different pattern of correlates of personal and treatment controls found in this study has been also documented in other studies. More specifically, higher personal control has been related to better blood glucose control, while higher treatment control has been related to poorer blood glucose control in adult patients with type-2 diabetes. Furthermore, higher treatment control beliefs have predicted slower return to work in patients with myocardial infarction [24]. In addition,
prior research in adults with epilepsy demonstrated that patients who identified more seizure-related symptoms, perceived their illness as being more serious, and/or expected more severe consequences reported higher levels of psychological distress [43]. In another study in adults with epilepsy, recruited in a primary care setting, almost 40% of the participants were identified as depressive, but 44% of the sample reported they would not seek help if they were feeling distressed. This was attributed to the fact that some people with epilepsy view daily low mood, persistent worry, and stress as usual troubles, whereas others view these symptoms as a clinical concern. These studies support that illness perceptions are not only important in view of disease management, but are also related to psychological distress and comorbid psychiatric disorders [44]. In the final model of the multiple regression analysis with quality of life as an outcome, only treatment control and emotional representation remained significant predictors, suggesting that believing that treatment has less control over the disease and that epilepsy has less emotional impact results in a better quality of life. It is difficult to understand why the perception of low treatment control results in a better quality of life. This result may very well be caused by the fact that personal control is associated with a better quality of life in adolescents, while external (professional) control is not. Perhaps autonomy aspects play an important role in this finding, and this should be explored further in future research. It should be explored to which extent beliefs of treatment control are relevant when the patient attributes control to other sources such as personal control or chance. The present study shows, however, that individual perceptions have a much more powerful effect on psychological distress and quality of life than demographic variables or disease severity. This study also has some limitations that should be taken into consideration. First, the cross-sectional design of this study does not allow
Table 3 Summary of hierarchic regression analysis for variables associated with quality of life of youth with epilepsy. Model 1
Gender Severity IP-consequences IP-timeline IP-personal control IP-treatment control IP-identity IP-concern IP-emotional representation
Model 2
Model 3
B (β)
SE B
P
B (β)
SE B
P
B (β)
SE B
P
−4.482 (−0.280)
1.553
0.005
−4.409 (−0.275) −1.132 (−0.197)
1.529 0.549
0.005 0.042
−1.800 (−0.112) −0.364 (−0.063) 0.472 (0.197) −0.609 (−0.226) 1.126 (0.307) −1.696 (−0.403) 0.024 (0.007) −0.694 (−0.242) −0.801 (−0.308)
1.565 0.543 0.380 0.376 0.650 0.715 0.414 0.394 0.407
0.253 0.504 0.218 0.109 0.087 0.020 0.953 0.082 0.052
Model 1: R2 = 0.078, adjusted R2 = 0.069, F = 8.32, df = 1, P b 0.010. Model 2: R2 = 0.117, adjusted R2 = 0.099, F = 6.42, df = 2, P b 0.010. Model 3: R2 = 0.366, adjusted R2 = 0.303, F = 5.77, df = 9, P b 0.001.
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us to draw any conclusions about causality. As a consequence, many of the associations can be explained in two directions. Secondly, we decided to exclude youngsters with comorbidities, although other authors stress the importance of identifying and treating the broad spectrum of comorbidities in epilepsy [45–48]. This exclusion criterion not only rendered recruitment more difficult, but may have also reduced the generalizability of our findings to youngsters with epilepsy. Thirdly, patients were recruited from one health care institution. This may result in a bias due to local referral patterns and medical practices. Lastly, in this study, the perception of quality of life by parents was not taken into account as an additional dependent variable, although this could provide a more complete picture. Due to the fact that the present study served as a base for the development of a psychoeducational intervention program that will be offered to the youngsters, we decided to focus only on the young patients with epilepsy themselves, although parents are also an important target of intervention. Despite the high prevalence of epilepsy in children and adolescents and the many studies that point at psychological distress and reduced quality of life as important consequences, studies investigating the effect of psychoeducational interventions in youngsters with epilepsy on psychological distress and quality of life are sparse [12,49–51]. Understandably, most interventions offered to young patients with epilepsy focus on seizure reduction rather than on the reduction of psychological distress or the improvement of quality of life [52]. In recent years, a few interventions were developed based on cognitive-behavioral approaches and self-management theory with promising results [50,52,53]. The necessity for more comprehensive interventions based on self-regulation theory has been clearly advocated [21]. The results of this study which was conducted from a self-regulation perspective, clearly show that illness perceptions should be future intervention targets in order to reduce psychological distress and increase quality of life in young patients with epilepsy. 5. Conclusions/recommendations The results of this study clearly show that self-regulation concepts, such as illness perceptions, should be future intervention targets in order to reduce psychological distress and increase quality of life in young patients with epilepsy. In view of intervention, it is, however, important to stress that individual illness perceptions should be screened at intake as illness perceptions can differ importantly from patient to patient. Acknowledgments We would like to thank all the young patients and their parents for participating in this study as well as the Greek State Scholarship Foundation (IKY) for the financial support. Lastly, I.R. would like to dedicate the present article to the memory of Konstantinos Sakellaropoulos. Conflict of interest The authors have no conflict of interest to declare. References [1] Baki O, Erdogan A, Kantarci O, Akisik G, Kayaalp L, Yalcinkaya C. Anxiety and depression in children with epilepsy and their mothers. Epilepsy Behav 2004;5:958–64. [2] Cohen E, Sade M, Benarroch F, Pollak Y, Gross-Tsur V. Locus of control, perceived parenting style, and symptoms of anxiety and depression in children with Tourette's syndrome. Eur Child Adolesc Psychiatry 2008;17:299–305. [3] Eiser C. Chronic childhood disease: an introduction to psychological theory and research. Melbourne: Cambridge University Press; 1990. [4] Kocayoruk E. The perceptions of parents and well-being of adolescents: link with basic psychological need satisfaction. Procedia Soc Behav Sci 2012;46:3624–8. [5] Moffat C, Dorris L, Connor L, Espie CA. The impact of childhood epilepsy on QOL: a qualitative investigation using focus group methods to obtain children's perspectives on living with epilepsy. Epilepsy Behav 2009;14:179–89.
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[6] Cheung C, Wirrell E. Adolescents' perception of epilepsy compared with other chronic diseases: “through a teenager's eyes”. J Child Neurol 2006;21:214–22. [7] Petrie KJ, Cameron LD, Ellis CJ, Buick D, Weinman J. Changing illness perceptions after myocardial infarction: an early intervention randomized controlled trial. Psychosom Med 2002;64:580–6. [8] Mirowsky J, Ross CE. Selecting outcomes for the sociology of mental health: issues of measurement and dimensionality. J Health Soc Behav 2002;43:152–70. [9] Drapeau A, Marchand A, Beaulieu-Prévost D. Epidemiology of psychological distress, mental illnesses — understanding, prediction and control. In: L'Abate L, editor. InTech. ISBN 978-953-307-662-1; 2012. http://dx.doi.org/10.5772/30872 [Last accessed 15/02/2015. Available from: http://www.intechopen.com/books/mentalillnesses-understanding-prediction-and-control/epidemiology-of-psychologicaldistress]. [10] WHOQOL Group. Measuring quality of life. Last accessed 15/02/2015. Available from: http://www.who.int/mental_health/media/68.pdf; 1997. [11] Appleton R, Gibbs J. Epilepsy in childhood and adolescence. 3rd ed. London: Informa Healthcare; 2007. [12] Clary LE, Vander Wal JS, Titus JB. Examining health-related QOL, adaptive skills, and psychological functioning in children and adolescents with epilepsy presenting for a neuropsychological evaluation. Epilepsy Behav 2010;19:487–93. [13] Collins S. The psychosocial effect of epilepsy on adolescents and young adults. Nurs Stand 2011;25:48–56. [14] Steinberg L. Adolescence. New York: McGraw-Hill, Inc.; 1996. [15] Garnefski N, Diekstra RFW. ‘Comorbidity’ of emotional, behavioural and cognitive problems in adolescence. J Youth Adolesc 1997;26:321–8. [16] Beyenburg S, Mitchell AJ, Schmidt D, Elger CE, Reuber M. Anxiety in patients with epilepsy: systematic review and suggestions for clinical management. Epilepsy Behav 2005;7:161–71. [17] Dunn D. Neuropsychiatric aspects of epilepsy in children. Epilepsy Behav 2003;4: 101–6. [18] Dunn D, Austin J. Behaviour issues in pediatric epilepsy. Neurology 1999;53:96–100. [19] Hixson JD, Kirsch HE. The effects of epilepsy and its treatments on affect and emotion. Neurocase 2009;15:206–16. [20] McEwan MJ, Espie CA, Metcalfe J, Brodie MJ, Wilson MT. Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods. Seizure 2004;13:15–31. [21] Maes S, Karoly P. Self-regulation assessment and intervention in physical health and illness: a review. Appl Psychol 2005;54:267–99. [22] Leventhal H. Findings and theory of the study of fear communications. Adv Exp Soc Psychol 1970;5:119–86. [23] Leventhal H, Meyer D, Nerenz D. The common sense representation of illness danger. In: Rachman S, editor. Medical Psychology. New York: Pergamon Press; 1980. p. 7–30. [24] Broadbent E, Petrie KJ, Main J, Weinman J. The Brief Illness Perception Questionnaire. J Psychosom Res 2006;60:631–7. [25] Diefenbach MA, Leventhal H. The common-sense model of illness representation: theoretical and practical considerations. J Soc Distress Homeless 1996;5:11–38. [26] Rizou I, Nikaina I, Kotsalis C, Paraskevoulakos E, Bazigou H, Papavasiliou A. Illness perceptions of children and adolescents with benign childhood epilepsy with centrotemporal spikes. ICNApedia 2010;1:4. [27] Cramer JA, Westbrook LE, Devinsky O, Perrine K, Glassman MB, Camfield C. Development of the QOL in Epilepsy Inventory for Adolescents: the QOLIE-AD-48. Epilepsia 1999;40:1114–21. [28] Heimlich TE, Westbrook LE, Austin JK, Cramer JA, Devinsky O. Brief report: adolescents' attitudes toward epilepsy. Further validation of the Child Attitude toward Illness Scale (CATIS). J Pediatr Psychol 2000;25:339–45. [29] Deci EL, Ryan RM. The “what” and “why” of goal pursuits: human needs and the selfdetermination of behavior. Psychol Inq 2000;11:227–68. [30] Zubialde JP, Mold J, Eubank D. Outcomes that matter in chronic illness: a taxonomy informed by self-determination and adult-learning theory. Fam Syst Health 2009; 27:193–200. [31] Wehmeyer M, Schwartz M. Self-determination and positive adult outcomes: a follow-up study of adolescents with mental retardation or learning disabilities. Except Child 1997;53:245–55. [32] Williams GC, Robin GC, Ryan RM, Grolnick WS, Deci EL. Autonomous regulation and long-term medication adherence in adult outpatients. Health Psychol 1998;17: 269–76. [33] Carpay HA, Vermeulen J, Stroink H, Brouwer OF, Peters AC, van Donselaar C, et al. Disability due to restrictions in childhood epilepsy. Dev Med Child Neurol 1997; 39:521–6. [34] McDougall J, Evans J, Baldwin P. The importance of self-determination to perceived QOL for adolescents and young adults with chronic conditions and disabilities. Remedial Spec Educ 2010;31:252–60. [35] Smith BA, Shuchman M. Problem of nonadherence in chronically ill adolescents: strategies for assessment and intervention. Curr Opin Pediatr 2005;17:613–8. [36] Haber LC, Austin JK, Huster GR, Lane KA, Perkins SM. Relationships between differences in mother–father perceptions and self-concept and depression in children with epilepsy. J Fam Nurs 2003;9:59–78. [37] Berg AT. Identification of pharmacoresistant epilepsy. Neurol Clin 2009;27:1003–13. [38] Williams GC, Grow VM, Freedman Z, Ryan RM, Deci EL. Motivational predictors of weight-loss and weight-loss maintenance. J Pers Soc Psychol 1996;70:115–26. [39] Grolnick WS, Ryan RM, Deci EL. The inner resources for school performance: motivational mediators of children's perceptions of their parents. J Educ Psychol 1991;83: 508–17. [40] Chorpita BF, Yim LM, Moffitt CE, Umemoto LA, Francis SE. Assessment of symptoms of DSM-IV anxiety and depression in children: a Revised Child Anxiety and Depression Scale. Behav Res Ther 2000;38:835–55.
150
I. Rizou et al. / Epilepsy & Behavior 46 (2015) 144–150
[41] The KIDSCREEN Group Europe. The KIDSCREEN Questionnaires: QOL questionnaires for children and adolescents. Lengerich: Pabst Science Publishers; 2006. [42] Robitail S, Ravens-Sieberer U, Simeoni MC, Rajmil L, Bruil J, Power M, et al. Testing the structural and cross-cultural validity of the KIDSCREEN-27 QOL questionnaire. Qual Life Res 2007;16:1335–45. [43] Goldstein LH, Holland L, Soteriou H, Mellers JDC. Illness representations, coping styles and mood in adults with epilepsy. Epilepsy Res 2005;67:1–11. [44] Margrove KL, Thapar AK, Mensah SA, Kerr MP. Help-seeking and treatment preferences for depression in epilepsy. Epilepsy Behav 2011;22:740–4. [45] Caplan R, Siddarth P, Stahl L, Lanphier E, Vona P, Gurbani S, et al. Childhood absence epilepsy: behavioral, cognitive, and linguistic comorbidities. Epilepsia 2008;49: 1838–46. [46] Dunn DW, Austin JK, Perkins SM. Prevalence of psychopathology in childhood epilepsy: categorical and dimensional measures. Dev Med Child Neurol 2009;51: 364-372. [47] Rodenburg R, Stams GJ, Meijer AM, Aldenkump AP, Dekovic M. Psychopathology in children with epilepsy: a meta-analysis. J Pediatr Psychol 2005;30:453–68.
[48] Turky A, Beavis JM, Thapar AK, Kerr MP. Psychopathology in children and adolescents with epilepsy: an investigation of predictive variables. Epilepsy Behav 2008; 12:136–44. [49] Rothenberg ME, Franciosi J, Hommel KA. Health-related quality of life across pediatric chronic conditions. J Pediatr 2010;156:639–44. [50] Wagner JL, Smith G, Ferguson P, van Bakergem K, Hrisko S. Feasibility of a pediatric cognitive-behavioral self-management intervention: Coping Openly and Personally with Epilepsy (COPE). Seizure 2011;20:462–7. [51] Varni JW, Limbers CA, Burwinkle TM. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQLTM 4.0 Generic Core Scales. Health Qual Life Outcomes 2007;5:43–57. [52] Blocher JB, Fujikawa M, Sung C, Jackson DC, Jones JE. Computer-assisted cognitive behavioral therapy for children with epilepsy and anxiety: a pilot study. Epilepsy Behav 2013;27:70–6. [53] Wagner JL, Smith G. Psychosocial intervention in pediatric epilepsy: a critique of the literature. Epilepsy Behav 2006;8:39–49.
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Illness perceptions determine psychological distress and quality of life in youngsters with epilepsy Ioanna Rizou a,⁎, Veronique De Gucht b,1, Antigone Papavasiliou c,2, Stan Maes b,1 a b c
Child Psychiatry Department, Mental Health Center of General Hospital of Athens “G. Gennimatas”, Athens, Greece Health, Medical and Neuropsychology Department, Leiden University, Leiden, The Netherlands Child Neurology Department, Pendeli Children's Hospital, Athens, Greece
a r t i c l e
i n f o
Article history: Received 22 February 2015 Revised 19 March 2015 Accepted 21 March 2015 Available online 19 April 2015 Keywords: Epilepsy Children Adolescents Distress Quality of life Self-regulation Illness perceptions
a b s t r a c t The aim of this cross-sectional study was to explore the extent to which gender, epilepsy severity, and selfregulation concepts (illness perceptions, autonomous treatment regulation, perceived autonomy support by parents) predict psychological distress and quality of life (QoL) in young patients with epilepsy. Structured interviews were conducted in 100 patients (Mage = 13.9, SD = 2.21, 41% girls), and data were analyzed by means of multiple hierarchical regression analyses. Seizures of most patients (91%) were well controlled by antiepileptics, 3% of the patients had infrequent seizures, and seizures in 6% were pharmacoresistant. At a multivariate level, it appeared that youngsters with epilepsy who expect that their disease will last for a long time, who believe that they have less personal control over their illness, and who expect the illness to have a high emotional impact reported higher levels of distress. In addition, a better QoL was reported by youngsters who believed that treatment did not control their illness and who thought that their epilepsy would not affect them emotionally. Findings indicate the importance of illness perceptions, and it is suggested that they should be targeted in future interventions in youngsters with epilepsy. © 2015 Elsevier Inc. All rights reserved.
1. Introduction To date, research on determinants of psychological distress and quality of life in children and adolescents suffering from epilepsy has focused mainly on: 1) disease characteristics (e.g., severity, illness duration, frequency of seizures, nature of symptoms, side effects of drugs), 2) characteristics of the adolescent (e.g., age, gender, levels of autonomy, locus of control), and 3) characteristics of the family (e.g., parenting style, problem-solving abilities) [1–5]. It is remarkable that many studies have investigated relatively stable disease, personal and family characteristics as determinants of distress, and quality of life rather than perceptions, attitudes, or skills of patients that can be more easily influenced by means of interventions [6]. For this reason, we aimed to explore, apart from demographic and disease characteristics, the role of more malleable determinants such as youngster's illness perceptions, autonomous motivation towards treatment, and parent's autonomy supportiveness on psychological distress and quality of life of youngsters with epilepsy. There is indeed increasing evidence that changing
⁎ Corresponding author at: 4 Agelon Street, Neo Irakleio 14121, Athens, Greece. Tel.: +30 6945461024. E-mail address: [email protected] (I. Rizou). 1 Pieter de la Court gebouw, Wassenaarseweg 52, 2333 AK Leiden, The Netherlands. 2 8 Mandelara Street, Nea Erythraia 14671, Athens, Greece.
http://dx.doi.org/10.1016/j.yebeh.2015.03.022 1525-5050/© 2015 Elsevier Inc. All rights reserved.
illness and treatment perceptions has a beneficial impact on psychological distress and quality of life [6,7]. 1.1. A self-regulation perspective to psychological distress and quality of life in youth with epilepsy Psychological distress is mostly defined as a state of emotional suffering characterized by symptoms of depression and anxiety [8]. It can be considered a “normal” emotional reaction to a stressor, but can satisfy diagnostic criteria for a psychiatric disorder if accompanied by other symptoms [9]. Quality of life is defined as “an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is incorporating individuals' physical health, psychological state, level of independence, social relationships, personal beliefs, and their relationships to salient features of the environment” [10]. The above concepts are not only multidimensional, but also constantly changing. Preadolescence and adolescence are characterized by important biological, psychological, and social transitions. During these periods, independence, individuality, and freedom become increasingly important, and a chronic disease, such as epilepsy, can seriously interfere with development [1,11–15]. Youngsters suffering from epilepsy frequently report not being in control of their lives and feeling as if they have lost their freedom, leading to higher levels of depression and anxiety (psychological distress) as well as lower levels of
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quality of life [1,16–20]. The experience of lack of control, autonomy, and freedom can be approached from a self-regulation perspective. Self-regulation theories are centered on the idea that all behavior is goal-directed and that cognitions and skills play an important role in personal goal attainment. Illness cognitions, autonomous versus coerced regulation, and autonomy supportiveness are important concepts from this perspective [21].
1.2. Illness perceptions Illness perceptions can be defined as patients' beliefs and expectations about their illness (or a specific symptom) [22,23]. Important attributes of illness perceptions are according to Leventhal's self-regulation theory: identity (the name or label given to the illness or symptoms), timeline (the perceived time trajectory of the illness), consequences (the expected future effects and outcomes of the illness), cause (the supposed etiology of the illness), and cure or control (the extent to which the patients believe that they may recover or have personal control over the illness). Finally, emotional representations of the illness incorporate anticipated negative emotional reactions such as anger, fear, and distress due to the presence of the disease [24,25]. Research in children and adolescents with epilepsy shows that some may be resilient and/or accepting, while others believe that everything is under control [26] or have important concerns regarding prognosis and are concerned about the consequences of poor adherence to treatment because of possible seizures [5]. Despite this, very few studies investigate their role of illness perceptions based on a solid psychological framework [26–28].
1.3. Treatment self-regulation Self-regulation is initiated when a selection or activation of a particular goal (either conscious or unconscious) occurs. According to Deci and Ryan's (2000) Self-Determination Theory (SDT), autonomous regulation occurs when a goal is considered to be important for the person and is chosen by himself, whereas in the case of controlled regulation, other people set the goal, or there is pressure to attain this goal by external forces [21,29–31]. Research in adults suffering from various chronic diseases showed that medication adherence is positively related to patients' autonomous motivation [21,32].
1.4. Parent's autonomy supportiveness Parenting style is of great importance to the development and wellbeing of all adolescents, but especially to youngsters suffering from a chronic illness [2,4]. Young people whose parents are less flexible and overprotective may have poorer treatment compliance and, thereby, poorer seizure control. Parents who try to give their children progressively more control over their own illness are more autonomy supportive [4,33–36]. Autonomous regulation may have beneficial consequences in terms of stress and wellbeing if the parents support autonomous regulation of the youngsters suffering from epilepsy [29]. This study explores whether, after controlling for gender and disease severity, these self-regulation constructs do explain important parts of the variance in psychological distress and quality of life in youngsters with epilepsy. More specifically, we expect that: 1) female gender and disease severity will be positively related to psychological distress and negatively related to quality of life, 2) perceptions of control will be negatively related to psychological distress and positively related to quality of life, while all other illness cognitions will show an opposite relationship, and 3) both autonomous regulation and autonomy supportiveness will be negatively related to psychological distress and positively related to quality of life.
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2. Material and methods 2.1. Study design and patient recruitment Patients were recruited from the Epilepsy Clinic of the Paediatric Neurology Department of Pendeli Children's Hospital, which treats children and adolescents with epilepsy from the Athens metropolitan area but also accepts referrals from the whole of Greece. The present study served as the cornerstone for the development of an intervention program and was approved by the Ethical Research Committee of Pendeli Children's Hospital. Participants were recruited between March 2009 and January 2012 according to the following inclusion criteria: 1) age: 10–18 years old, 2) at least one epileptic seizure during the preceding year, 3) normal IQ, 4) no other chronic illness, physical disability, or mental disorder, 5) no surgical procedures during the preceding year, and 6) no medication change in the last 6 months. Four hundred medical records of youngsters consecutively examined at the Epilepsy Clinic were reviewed for their eligibility for the study. After examination of the medical records by the neurologist, 200 youngsters who fulfilled the inclusion criteria were approached during their prescheduled visits. Initially, parents were informed about the goals and procedures of the study by the treating neurologist. Subsequently a meeting with the parents and the young patient was planned to explain the study in more detail. The first 100 of them who agreed to participate signed informed consents and were included in the study. Next, all questionnaires were completed by the patient, without presence of the parents, in the context of an interview. The interviewer did not know any of the patients prior to this meeting and always asked the exact same questions of following a protocol. The interview lasted approximately 60 to 70 min. 2.2. Measures 2.2.1. Disease characteristics Data regarding disease characteristics were derived from the medical records and included type of epilepsy, duration, age of onset, time of last seizure, total number of seizures, and medication. The severity of epilepsy was evaluated on an ordinal scale with 6 categories. Starting from the least severe epilepsy, the categories were: 1) benign focal childhood epilepsy, 2) idiopathic generalized epilepsy, 3) epilepsy well controlled by medication but with unknown prognosis (unknown etiology of epilepsy), 4) symptomatic epilepsy with adequate response to medication (more than 6 months seizure free), 5) symptomatic epilepsy with moderate response to medication (less than 6 months seizure free), and 6) pharmacoresistance (failure to respond to at least 3 appropriately selected antiepileptics) [37]. In the present study, this severity scale was used in the analyses with lower scores indicating less severe epilepsy. All data, except for disease characteristics, were obtained by means of the following questionnaires: 2.2.2. Illness perceptions 2.2.2.1. Brief Illness Perceptions Questionnaire (BIPQ) [24]. Eight items measure cognitive illness representations (consequences, timeline, identity, personal, and treatment control) and emotional representations (concern and emotion) while there is also an item asking the patient to mention the factors that, according to his/her opinion, caused the illness. A 10-point Likert scale is used with lower scores indicating more beneficial perceptions (i.e., for timeline: 0 = my epilepsy will last for a very short time to 10 = it will last forever), except for coherence and personal and treatment control, where higher scores represent more beneficial perceptions. In order to compute the total score, the
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scores of these items are reversed and, therefore, in all items a lower score reflects a less threatening view of the illness. 2.2.3. Autonomous treatment self-regulation 2.2.3.1. Treatment Self-Regulation Questionnaire (TSRQ) [38]. The TSRQ questionnaire was adapted for the present study to measure whether the patient's motivation for treatment adherence was autonomous (3 items) or controlled (7 items). Each item was rated on a 7-point Likert scale (where 1 = not true at all and 7 = very true). The items with regard to autonomous regulation were added up and divided by 7, resulting in the final score for autonomous treatment regulation. The scores of the 7 items concerning controlled regulation were also added up and divided by 7, resulting in the final score for controlled treatment regulation. By subtracting the Z-score for controlled regulation from the Z-score for autonomous regulation, a combined score for the treatment regulatory style was calculated, with higher scores indicating a more autonomous style, with low scores indicating more controlled regulation.
on the findings of the preliminary analyses, separate multiple hierarchical regression analyses were conducted for each outcome. Both for psychological distress and quality of life in the first block, gender was entered in the analysis (model 1). In the second block, severity was entered (model 2). In the third block, illness perceptions were added (model 3). 3. Results 3.1. Patients The 100 participants in our study had a mean age of 13.9 years (SD = 2.21) and 59% of them were boys. Regarding epilepsy severity, 6% of these patients fulfilled criteria for pharmacoresistance, 3% had less than 6 months seizure freedom (symptomatic epilepsy with moderate response to medication), 24% were more than 6 months seizure free (symptomatic epilepsy with adequate response to medication), 14% had seizures that were well controlled by medication but with unknown prognosis, 30% had idiopathic generalized epilepsy, and 23% had benign focal childhood epilepsy.
2.2.4. Autonomy support by parents 3.2. Preliminary analyses 2.2.4.1. Perceptions of Parents Scales (POPS) [39]. The POPS assesses children's perceptions of the degree to which their parents are autonomy supportive and involved. Involvement concerns devoting resources to their children, meaning, being available to them, knowledgeable about their lives, and concerned about what is going on with them. Thus, mothers and fathers each get a score on the degree to which they are perceived as autonomy supportive and involved with their children. The original questionnaire has 22 items (11 for the mothers and the same 11 items for the fathers), but for the present study we used 11 items (by replacing the words “mother/father” with the word “parents”). The remaining items formed the autonomy support subscale (6 items) and the involvement subscale (5 items). For every item, participants have to choose one out of four descriptions of parents that most resembled their parents.
3.2.1. Psychological distress The Pearson's correlations between psychological distress and the predictors revealed significant associations, with the exception of severity, coherence, autonomous treatment regulation, and autonomy supportiveness by parents (Table 1). For this reason, coherence, autonomous treatment regulation, and autonomy supportiveness by parents were not included as predictors in the regression analysis. 3.2.2. Quality of life Quality of life was significantly associated with many predictors except with autonomous treatment regulation and autonomy supportiveness by parents (Table 1). As the correlation with coherence was, however, weak, we also did not enter coherence as a predictor in the regression analysis.
2.2.5. Psychological distress 3.3. Hierarchical regression analyses 2.2.5.1. Revised Children's Anxiety and Depression Scale (RCADS) [40]. This questionnaire consists of 47 items with 4 answer categories (“never”, “sometimes”, “often” and “always”) and measures: 1) separation anxiety, 2) generalized anxiety, 3) panic, 4) social phobia, 5) obsessions/ compulsions, 6) depression, 7) total anxiety, and 8) total anxiety and depression (psychological distress). In the present study, we used only the total psychological distress (anxiety and depression) score with higher scores indicating more psychological distress.
3.3.1. Predicting psychological distress The results of the hierarchical regression analysis with psychological distress as the dependent variable are shown in Table 2. The final model (model 3: R2 = 0.436, adjusted R2 = 0.379, F = 7.716, df = 9, P b 0.001) suggested that believing that epilepsy will last for a long time, feeling that one has less personal control over one's disease, believing that treatment can help, and feeling that epilepsy will have a high emotional impact predict higher levels of distress.
2.2.6. Quality of life 2.2.6.1. KIDSCREEN-27 [41,42]. The KIDSCREEN-27 questionnaire consists of 27 items used to assess health-related quality of life across 5 dimensions: physical well-being (5 items), psychological well-being (7 items), parent relations and autonomy (7 items), social support and peers (4 items), and school environment (4 items). Items are rated on a 5-point scale (1 = never and 5 = always) within the timeframe of one week. Scores are computed for each dimension using the person's estimation based on a Rasch model. For the purpose of the present study, only the total score was used. 2.3. Data analysis With respect to the patient characteristics, categorical data were described as numbers and percentages. Initially, preliminary analyses were carried out, using Pearson's correlations, in order to examine the univariate relationships between all the variables used. Second, based
3.3.2. Predicting quality of life As presented in Table 3, in our final model (model 3: R2 = 0.366, adjusted R2 = 0.303, F = 5.77, df = 9, P b 0.001), treatment control and emotional representation were the only significant predictors of quality of life. The final model suggested that not believing that treatment will control the illness and believing that epilepsy will have no big emotional impact predict a better quality of life. 4. Discussion The main findings of this study suggest that illness perceptions do predict psychological distress and quality of life, but that autonomous treatment regulation and perceived autonomy support by parents had no predictive power. Not all illness perceptions appeared, however, to be significant predictors of psychological distress and quality of life. Psychological distress is predicted by timeline, personal control, treatment control, and emotional representation. Quality of life, on the
Table 1 Pearson's correlations between all variables. Gender
Severity
Consequences Timeline
0.368⁎⁎ 0.000 0.343⁎⁎ 0.000 0.649⁎⁎ 0.000 1 0.460⁎⁎ 0.000 0.376⁎⁎ 0.000 0.439⁎⁎ 0.000 0.696⁎⁎ 0.000 0.396⁎⁎ 0.000 0.461⁎⁎ 0.000 −0.102 0.314 −0.002 0.982 0.534⁎⁎ 0.000 −0.478⁎⁎ 0.000
Treatment control
Identity
0.210⁎ 0.036 0.370⁎⁎ 0.000 0.364⁎⁎ 0.000 0.460⁎⁎
0.026 0.800 0.252⁎ 0.011 0.322⁎⁎ 0.001 0.376⁎⁎
0.264⁎⁎ 0.008 0.210⁎ 0.036 0.394⁎⁎ 0.000 0.439⁎⁎
0.000 1
0.000 0.830⁎⁎ 0.000 1
0.000 0.469⁎⁎ 0.000 0.417⁎⁎ 0.000 1
0.830⁎⁎ 0.000 0.469⁎⁎ 0.000 0.427⁎⁎
Concern
Coherence
Emotional Autonomous Perceived autonomy Distress representation treatment support by parents regulation
0.357⁎⁎ −0.010 0.000 0.918 0.235⁎ 0.221⁎ 0.018 0.027 0.603⁎⁎ 0.436⁎⁎ 0.000 0.000 0.696⁎⁎ 0.396⁎⁎ 0.000 0.000 0.427⁎⁎ 0.307⁎⁎
0.355⁎⁎ 0.000 0.207⁎ 0.039 0.749⁎⁎ 0.000 0.461⁎⁎
0.000 0.362⁎⁎ 0.000 0.605⁎⁎ 0.000 1
0.000 0.204⁎ 0.041 0.559⁎⁎ 0.000 0.574⁎⁎
0.002 0.322⁎⁎ 0.001 0.470⁎⁎ 0.000 0.508⁎⁎
0.417⁎⁎ 0.000 0.362⁎⁎ 0.605⁎⁎ 0.000 0.000 0.000 0.000 0.307⁎⁎ 0.322⁎⁎ 0.470⁎⁎ 0.508⁎⁎ 1 0.002 0.001 0.000 0.000 0.366⁎⁎ 0.204⁎ 0.559⁎⁎ 0.574⁎⁎ 0.312⁎⁎ 0.000 0.041 0.000 0.000 0.002 0.041 0.007 −0.180 −0.205⁎ −0.061 0.687 0.946 0.074 0.041 0.548 0.108 0.060 0.101 −0.034 −0.011 0.286 0.550 0.316 0.738 0.915 0.214⁎ 0.233⁎ 0.411⁎⁎ 0.549⁎⁎ 0.188 0.032 0.020 0.000 0.000 0.061 ⁎⁎ ⁎⁎ ⁎⁎ ⁎⁎ −0.319 −0.336 −0.400 −0.522 −0.210⁎ 0.001 0.001 0.000 0.000 0.036
0.000 0.366⁎⁎
0.000 0.312⁎⁎ 0.002 1 −0.163 0.104 −0.078 0.443 0.447⁎⁎ 0.000 −0.422⁎⁎ 0.000
−0.078 0.439 −0.125 0.215 −0.276⁎⁎ 0.005 −0.102 0.314 0.041 0.687 0.007 0.946 −0.180 0.074 −0.205⁎ 0.041 −0.061 0.548 −0.163 0.104 1 0.140 0.164 −0.058 0.563 −0.065 0.519
0.083 0.412 0.054 0.592 −0.093 0.358 −0.002 0.982 0.108 0.286 0.060 0.550 0.101 0.316 −0.034 0.738 −0.011 0.915 −0.078 0.443 0.140 0.164 1 0.030 0.771 −0.010 0.918
Quality of life
0.359⁎⁎ 0.000 0.090 0.375 0.414⁎⁎ 0.000 0.534⁎⁎
−0.280⁎⁎ 0.005 −0.203⁎ 0.043 −0.388⁎⁎ 0.000 −0.478⁎⁎
0.000 0.214⁎ 0.032 0.233⁎ 0.020 0.411⁎⁎ 0.000 0.549⁎⁎
0.000 −0.319⁎⁎ 0.001 −0.336⁎⁎ 0.001 −0.400⁎⁎ 0.000 −0.522⁎⁎
0.000 0.188 0.061 0.447⁎⁎ 0.000 −0.058 0.563 0.030 0.771 1
0.000 −0.210⁎ 0.036 −0.422⁎⁎ 0.000 −0.065 0.519 −0.010 0.918 −0.772⁎⁎ 0.000 −0.772⁎⁎ 1 0.000
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R 1 0.023 0.288⁎⁎ Sig 0.817 0.004 Severity R 0.023 1 0.238⁎ Sig 0.817 0.017 Consequences R 0.288⁎⁎ 0.238⁎ 1 Sig 0.004 0.017 Timeline R 0.368⁎⁎ 0.343⁎⁎ 0.649⁎⁎ Sig 0.000 0.000 0.000 Personal control R 0.210⁎ 0.370⁎⁎ 0.364⁎⁎ Sig 0.036 0.000 0.000 Treatment control R 0.026 0.252⁎ 0.322⁎⁎ Sig 0.800 0.011 0.001 Identity R 0.264⁎⁎ 0.210⁎ 0.394⁎⁎ Sig 0.008 0.036 0.000 Concern R 0.357⁎⁎ 0.235⁎ 0.603⁎⁎ Sig 0.000 0.018 0.000 Coherence R −0.010 0.221⁎ 0.436⁎⁎ Sig 0.918 0.027 0.000 Emotional representation R 0.355⁎⁎ 0.207⁎ 0.749⁎⁎ Sig 0.000 0.039 0.000 Autonomous treatment regulation R −0.078 −0.125 −0.276⁎⁎ Sig 0.439 0.215 0.005 Perceived autonomy support by parents R 0.083 0.054 −0.093 Sig 0.412 0.592 0.358 0.414⁎⁎ Distress R 0.359⁎⁎ 0.090 Sig 0.000 0.375 0.000 Quality of life R −0.280⁎⁎ −0.203⁎ −0.388⁎⁎ Sig 0.005 0.043 0.000 Gender
Personal control
⁎⁎ Correlation is significant at the 0.01 level. ⁎ Correlation is significant at the 0.05 level.
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Table 2 Summary of hierarchic regression analysis for variables associated with distress of youth with epilepsy. Model 1
Gender Severity IP-consequences IP-timeline IP-personal control IP-treatment control IP-identity IP-concern IP-emotional representation
Model 2
Model 3
B (β)
SE B
P
B (β)
SE B
P
B (β)
SE B
P
8.384 (0.359)
2.203
0.000
8.340 (0.357) 0.683 (0.081)
2.207 0.792
0.000 0.391
3.791 (0.162) −0.430 (−0.051) −0.735 (−0.211) 1.474 (0.375) −2.258 (−0.423) 2.225 (0.362) 0.173 (0.035) 0.885 (0.211) 1.232 (0.325)
2.155 0.748 0.523 0.518 0.894 0.985 0.569 0.543 0.560
0.082 0.566 0.164 0.005 0.013 0.026 0.761 0.107 0.030
Model 1: R2 = 0.129, adjusted R2 = 0.120, F = 14.49, df = 1, P b 0.001. Model 2: R2 = 0.135, adjusted R2 = 0.118, F = 7.59, df = 2, P b 0.01. Model 3: R2 = 0.436, adjusted R2 = 0.379, F = 7.71, df = 9, P b 0.001.
other hand, is predicted by treatment control and emotional representation. In contrast to previous research, this study was based on a selfregulation theory. In addition, the strict inclusion criteria excluded possible effects due to comorbidity. As such, this study is novel, but at the same time, it is difficult to compare its results with the results of previous studies. Coherence, autonomous treatment regulation, and autonomy supportiveness by parents were not significantly related to psychological distress and quality of life and were, therefore, excluded from both regression analyses. The lack of relationship between autonomous regulation and autonomy supportiveness, on the one hand, and psychological distress, on the other hand, is possibly due to the age range of the respondents. Autonomous treatment regulation is known to increase with age as well as autonomy supportiveness by parents. The same applies to the relationship with quality of life. Future studies should explore this developmental hypothesis. The fact that the illness perceptions questionnaire includes the dimensions of personal and treatment control allows, however, the further exploration of the role of personal or external control over the illness. The final multiple regression model with psychological distress as an outcome suggests that young patients who believe that their epilepsy will last longer, feel that they have less personal control over their epilepsy, believe that treatment controls the disease, and expect epilepsy to have more emotional impact suffer from higher levels of psychological distress. The different pattern of correlates of personal and treatment controls found in this study has been also documented in other studies. More specifically, higher personal control has been related to better blood glucose control, while higher treatment control has been related to poorer blood glucose control in adult patients with type-2 diabetes. Furthermore, higher treatment control beliefs have predicted slower return to work in patients with myocardial infarction [24]. In addition,
prior research in adults with epilepsy demonstrated that patients who identified more seizure-related symptoms, perceived their illness as being more serious, and/or expected more severe consequences reported higher levels of psychological distress [43]. In another study in adults with epilepsy, recruited in a primary care setting, almost 40% of the participants were identified as depressive, but 44% of the sample reported they would not seek help if they were feeling distressed. This was attributed to the fact that some people with epilepsy view daily low mood, persistent worry, and stress as usual troubles, whereas others view these symptoms as a clinical concern. These studies support that illness perceptions are not only important in view of disease management, but are also related to psychological distress and comorbid psychiatric disorders [44]. In the final model of the multiple regression analysis with quality of life as an outcome, only treatment control and emotional representation remained significant predictors, suggesting that believing that treatment has less control over the disease and that epilepsy has less emotional impact results in a better quality of life. It is difficult to understand why the perception of low treatment control results in a better quality of life. This result may very well be caused by the fact that personal control is associated with a better quality of life in adolescents, while external (professional) control is not. Perhaps autonomy aspects play an important role in this finding, and this should be explored further in future research. It should be explored to which extent beliefs of treatment control are relevant when the patient attributes control to other sources such as personal control or chance. The present study shows, however, that individual perceptions have a much more powerful effect on psychological distress and quality of life than demographic variables or disease severity. This study also has some limitations that should be taken into consideration. First, the cross-sectional design of this study does not allow
Table 3 Summary of hierarchic regression analysis for variables associated with quality of life of youth with epilepsy. Model 1
Gender Severity IP-consequences IP-timeline IP-personal control IP-treatment control IP-identity IP-concern IP-emotional representation
Model 2
Model 3
B (β)
SE B
P
B (β)
SE B
P
B (β)
SE B
P
−4.482 (−0.280)
1.553
0.005
−4.409 (−0.275) −1.132 (−0.197)
1.529 0.549
0.005 0.042
−1.800 (−0.112) −0.364 (−0.063) 0.472 (0.197) −0.609 (−0.226) 1.126 (0.307) −1.696 (−0.403) 0.024 (0.007) −0.694 (−0.242) −0.801 (−0.308)
1.565 0.543 0.380 0.376 0.650 0.715 0.414 0.394 0.407
0.253 0.504 0.218 0.109 0.087 0.020 0.953 0.082 0.052
Model 1: R2 = 0.078, adjusted R2 = 0.069, F = 8.32, df = 1, P b 0.010. Model 2: R2 = 0.117, adjusted R2 = 0.099, F = 6.42, df = 2, P b 0.010. Model 3: R2 = 0.366, adjusted R2 = 0.303, F = 5.77, df = 9, P b 0.001.
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us to draw any conclusions about causality. As a consequence, many of the associations can be explained in two directions. Secondly, we decided to exclude youngsters with comorbidities, although other authors stress the importance of identifying and treating the broad spectrum of comorbidities in epilepsy [45–48]. This exclusion criterion not only rendered recruitment more difficult, but may have also reduced the generalizability of our findings to youngsters with epilepsy. Thirdly, patients were recruited from one health care institution. This may result in a bias due to local referral patterns and medical practices. Lastly, in this study, the perception of quality of life by parents was not taken into account as an additional dependent variable, although this could provide a more complete picture. Due to the fact that the present study served as a base for the development of a psychoeducational intervention program that will be offered to the youngsters, we decided to focus only on the young patients with epilepsy themselves, although parents are also an important target of intervention. Despite the high prevalence of epilepsy in children and adolescents and the many studies that point at psychological distress and reduced quality of life as important consequences, studies investigating the effect of psychoeducational interventions in youngsters with epilepsy on psychological distress and quality of life are sparse [12,49–51]. Understandably, most interventions offered to young patients with epilepsy focus on seizure reduction rather than on the reduction of psychological distress or the improvement of quality of life [52]. In recent years, a few interventions were developed based on cognitive-behavioral approaches and self-management theory with promising results [50,52,53]. The necessity for more comprehensive interventions based on self-regulation theory has been clearly advocated [21]. The results of this study which was conducted from a self-regulation perspective, clearly show that illness perceptions should be future intervention targets in order to reduce psychological distress and increase quality of life in young patients with epilepsy. 5. Conclusions/recommendations The results of this study clearly show that self-regulation concepts, such as illness perceptions, should be future intervention targets in order to reduce psychological distress and increase quality of life in young patients with epilepsy. In view of intervention, it is, however, important to stress that individual illness perceptions should be screened at intake as illness perceptions can differ importantly from patient to patient. Acknowledgments We would like to thank all the young patients and their parents for participating in this study as well as the Greek State Scholarship Foundation (IKY) for the financial support. Lastly, I.R. would like to dedicate the present article to the memory of Konstantinos Sakellaropoulos. Conflict of interest The authors have no conflict of interest to declare. References [1] Baki O, Erdogan A, Kantarci O, Akisik G, Kayaalp L, Yalcinkaya C. Anxiety and depression in children with epilepsy and their mothers. Epilepsy Behav 2004;5:958–64. [2] Cohen E, Sade M, Benarroch F, Pollak Y, Gross-Tsur V. Locus of control, perceived parenting style, and symptoms of anxiety and depression in children with Tourette's syndrome. Eur Child Adolesc Psychiatry 2008;17:299–305. [3] Eiser C. Chronic childhood disease: an introduction to psychological theory and research. Melbourne: Cambridge University Press; 1990. [4] Kocayoruk E. The perceptions of parents and well-being of adolescents: link with basic psychological need satisfaction. Procedia Soc Behav Sci 2012;46:3624–8. [5] Moffat C, Dorris L, Connor L, Espie CA. The impact of childhood epilepsy on QOL: a qualitative investigation using focus group methods to obtain children's perspectives on living with epilepsy. Epilepsy Behav 2009;14:179–89.
149
[6] Cheung C, Wirrell E. Adolescents' perception of epilepsy compared with other chronic diseases: “through a teenager's eyes”. J Child Neurol 2006;21:214–22. [7] Petrie KJ, Cameron LD, Ellis CJ, Buick D, Weinman J. Changing illness perceptions after myocardial infarction: an early intervention randomized controlled trial. Psychosom Med 2002;64:580–6. [8] Mirowsky J, Ross CE. Selecting outcomes for the sociology of mental health: issues of measurement and dimensionality. J Health Soc Behav 2002;43:152–70. [9] Drapeau A, Marchand A, Beaulieu-Prévost D. Epidemiology of psychological distress, mental illnesses — understanding, prediction and control. In: L'Abate L, editor. InTech. ISBN 978-953-307-662-1; 2012. http://dx.doi.org/10.5772/30872 [Last accessed 15/02/2015. Available from: http://www.intechopen.com/books/mentalillnesses-understanding-prediction-and-control/epidemiology-of-psychologicaldistress]. [10] WHOQOL Group. Measuring quality of life. Last accessed 15/02/2015. Available from: http://www.who.int/mental_health/media/68.pdf; 1997. [11] Appleton R, Gibbs J. Epilepsy in childhood and adolescence. 3rd ed. London: Informa Healthcare; 2007. [12] Clary LE, Vander Wal JS, Titus JB. Examining health-related QOL, adaptive skills, and psychological functioning in children and adolescents with epilepsy presenting for a neuropsychological evaluation. Epilepsy Behav 2010;19:487–93. [13] Collins S. The psychosocial effect of epilepsy on adolescents and young adults. Nurs Stand 2011;25:48–56. [14] Steinberg L. Adolescence. New York: McGraw-Hill, Inc.; 1996. [15] Garnefski N, Diekstra RFW. ‘Comorbidity’ of emotional, behavioural and cognitive problems in adolescence. J Youth Adolesc 1997;26:321–8. [16] Beyenburg S, Mitchell AJ, Schmidt D, Elger CE, Reuber M. Anxiety in patients with epilepsy: systematic review and suggestions for clinical management. Epilepsy Behav 2005;7:161–71. [17] Dunn D. Neuropsychiatric aspects of epilepsy in children. Epilepsy Behav 2003;4: 101–6. [18] Dunn D, Austin J. Behaviour issues in pediatric epilepsy. Neurology 1999;53:96–100. [19] Hixson JD, Kirsch HE. The effects of epilepsy and its treatments on affect and emotion. Neurocase 2009;15:206–16. [20] McEwan MJ, Espie CA, Metcalfe J, Brodie MJ, Wilson MT. Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods. Seizure 2004;13:15–31. [21] Maes S, Karoly P. Self-regulation assessment and intervention in physical health and illness: a review. Appl Psychol 2005;54:267–99. [22] Leventhal H. Findings and theory of the study of fear communications. Adv Exp Soc Psychol 1970;5:119–86. [23] Leventhal H, Meyer D, Nerenz D. The common sense representation of illness danger. In: Rachman S, editor. Medical Psychology. New York: Pergamon Press; 1980. p. 7–30. [24] Broadbent E, Petrie KJ, Main J, Weinman J. The Brief Illness Perception Questionnaire. J Psychosom Res 2006;60:631–7. [25] Diefenbach MA, Leventhal H. The common-sense model of illness representation: theoretical and practical considerations. J Soc Distress Homeless 1996;5:11–38. [26] Rizou I, Nikaina I, Kotsalis C, Paraskevoulakos E, Bazigou H, Papavasiliou A. Illness perceptions of children and adolescents with benign childhood epilepsy with centrotemporal spikes. ICNApedia 2010;1:4. [27] Cramer JA, Westbrook LE, Devinsky O, Perrine K, Glassman MB, Camfield C. Development of the QOL in Epilepsy Inventory for Adolescents: the QOLIE-AD-48. Epilepsia 1999;40:1114–21. [28] Heimlich TE, Westbrook LE, Austin JK, Cramer JA, Devinsky O. Brief report: adolescents' attitudes toward epilepsy. Further validation of the Child Attitude toward Illness Scale (CATIS). J Pediatr Psychol 2000;25:339–45. [29] Deci EL, Ryan RM. The “what” and “why” of goal pursuits: human needs and the selfdetermination of behavior. Psychol Inq 2000;11:227–68. [30] Zubialde JP, Mold J, Eubank D. Outcomes that matter in chronic illness: a taxonomy informed by self-determination and adult-learning theory. Fam Syst Health 2009; 27:193–200. [31] Wehmeyer M, Schwartz M. Self-determination and positive adult outcomes: a follow-up study of adolescents with mental retardation or learning disabilities. Except Child 1997;53:245–55. [32] Williams GC, Robin GC, Ryan RM, Grolnick WS, Deci EL. Autonomous regulation and long-term medication adherence in adult outpatients. Health Psychol 1998;17: 269–76. [33] Carpay HA, Vermeulen J, Stroink H, Brouwer OF, Peters AC, van Donselaar C, et al. Disability due to restrictions in childhood epilepsy. Dev Med Child Neurol 1997; 39:521–6. [34] McDougall J, Evans J, Baldwin P. The importance of self-determination to perceived QOL for adolescents and young adults with chronic conditions and disabilities. Remedial Spec Educ 2010;31:252–60. [35] Smith BA, Shuchman M. Problem of nonadherence in chronically ill adolescents: strategies for assessment and intervention. Curr Opin Pediatr 2005;17:613–8. [36] Haber LC, Austin JK, Huster GR, Lane KA, Perkins SM. Relationships between differences in mother–father perceptions and self-concept and depression in children with epilepsy. J Fam Nurs 2003;9:59–78. [37] Berg AT. Identification of pharmacoresistant epilepsy. Neurol Clin 2009;27:1003–13. [38] Williams GC, Grow VM, Freedman Z, Ryan RM, Deci EL. Motivational predictors of weight-loss and weight-loss maintenance. J Pers Soc Psychol 1996;70:115–26. [39] Grolnick WS, Ryan RM, Deci EL. The inner resources for school performance: motivational mediators of children's perceptions of their parents. J Educ Psychol 1991;83: 508–17. [40] Chorpita BF, Yim LM, Moffitt CE, Umemoto LA, Francis SE. Assessment of symptoms of DSM-IV anxiety and depression in children: a Revised Child Anxiety and Depression Scale. Behav Res Ther 2000;38:835–55.
150
I. Rizou et al. / Epilepsy & Behavior 46 (2015) 144–150
[41] The KIDSCREEN Group Europe. The KIDSCREEN Questionnaires: QOL questionnaires for children and adolescents. Lengerich: Pabst Science Publishers; 2006. [42] Robitail S, Ravens-Sieberer U, Simeoni MC, Rajmil L, Bruil J, Power M, et al. Testing the structural and cross-cultural validity of the KIDSCREEN-27 QOL questionnaire. Qual Life Res 2007;16:1335–45. [43] Goldstein LH, Holland L, Soteriou H, Mellers JDC. Illness representations, coping styles and mood in adults with epilepsy. Epilepsy Res 2005;67:1–11. [44] Margrove KL, Thapar AK, Mensah SA, Kerr MP. Help-seeking and treatment preferences for depression in epilepsy. Epilepsy Behav 2011;22:740–4. [45] Caplan R, Siddarth P, Stahl L, Lanphier E, Vona P, Gurbani S, et al. Childhood absence epilepsy: behavioral, cognitive, and linguistic comorbidities. Epilepsia 2008;49: 1838–46. [46] Dunn DW, Austin JK, Perkins SM. Prevalence of psychopathology in childhood epilepsy: categorical and dimensional measures. Dev Med Child Neurol 2009;51: 364-372. [47] Rodenburg R, Stams GJ, Meijer AM, Aldenkump AP, Dekovic M. Psychopathology in children with epilepsy: a meta-analysis. J Pediatr Psychol 2005;30:453–68.
[48] Turky A, Beavis JM, Thapar AK, Kerr MP. Psychopathology in children and adolescents with epilepsy: an investigation of predictive variables. Epilepsy Behav 2008; 12:136–44. [49] Rothenberg ME, Franciosi J, Hommel KA. Health-related quality of life across pediatric chronic conditions. J Pediatr 2010;156:639–44. [50] Wagner JL, Smith G, Ferguson P, van Bakergem K, Hrisko S. Feasibility of a pediatric cognitive-behavioral self-management intervention: Coping Openly and Personally with Epilepsy (COPE). Seizure 2011;20:462–7. [51] Varni JW, Limbers CA, Burwinkle TM. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQLTM 4.0 Generic Core Scales. Health Qual Life Outcomes 2007;5:43–57. [52] Blocher JB, Fujikawa M, Sung C, Jackson DC, Jones JE. Computer-assisted cognitive behavioral therapy for children with epilepsy and anxiety: a pilot study. Epilepsy Behav 2013;27:70–6. [53] Wagner JL, Smith G. Psychosocial intervention in pediatric epilepsy: a critique of the literature. Epilepsy Behav 2006;8:39–49.