Epilepsy and asthma-related anxiety in children: effects of EMDR.

(See Rationale in Protocol)
Children with epilepsy and asthma share the unpredictability of (paroxysmal)
physical manifestations occurring by means of epilepsy seizures, asthma
attacks, or wheezing. Meta-analyses show that these children are at increased
risk for developing psychopathology when compared to children from the general
population (Lavigne & Faier-Routman, 1993; McQuaid et al., 2001; Rodenburg,
Stams, Meijer, Aldenkamp, & Dekovi*, 2005). This may be related to the generic
aspects of having a chronic condition, such as unpredictability,
uncontrollability, insufficient coping with the condition, medication regimen
and medication side-effects, stigma, and family factors. Furthermore,
meta-analyses have shown that the risk for internalizing problems (i.e.
anxiety/depression, withdrawal, and somatic complaints) is higher than the risk
for externalizing (i.e. rule breaking behavior and aggression) problems in
children with epilepsy or asthma (Lavigne & Faier-Routman, 1993; McQuaid et
al., 2001; Rodenburg et al., 2005).
In explaining the increased risk for internalizing problems, anxiety for
seizures or asthma attacks may considerably account. That is, precipitants and
triggers of seizures or attacks may induce anxiety in children with epilepsy
and asthma (Kazak et al., 2006; Millikan Kean, Kelsay, Wamboldt, & Wamboldt,
2006; Ten Thoren & Petermann, 2000). For example, somatic sensations preceding
an epileptic seizure or asthma attack can become signs of immanent danger and
induce feelings of anxiety. Furthermore, specific somatic symptoms may remind
the child of a seizure or attack and this might induce feelings of anxiety too
(van Rood et al., 2005). In addition, other stimuli (e.g. specific situations)
may remind the child of seizures or attacks and induce anxiety as well.
Several studies report anxiety prevalence rates ranging from 15% to 33% in
adults and children with epilepsy (Caplan et al., 2005; Ettinger et al., 1998;
Vazquez & Devinsky, 2003; Williams et al., 2003). Regarding the prevalence of
anxiety in childhood asthma mixed results have been reported. In a
meta-analysis including 6 studies a small and non-significant effect size was
found (McQuaid et al., 2001). Goodwin, Fergusson, and Horwood (2004) found an
increased odds ratio of 1.6 for anxiety in youth with asthma and Richardson and
colleagues (2006) found an anxiety prevalence rate of 16.2% in children with
asthma in the state of Washington.
Based on learning theory, it is assumed that physical stimuli related to
epilepsy seizures or asthma attacks, can trigger anxiety in pediatric asthma en
epilepsy. For example, seizure phobia or fear for recurrent seizures in partial
epilepsy might be related to auras. An aura is the first phase of the seizure,
often experienced by patients as a precipitant of the seizure. In simple
partial epilepsy, consciousness is not (or partly) impaired and patients are
able to consciously experience their seizures. If the phenomena occurring
during the seizure (e.g., contraction of muscles, fear, or pain) are
experienced as frightening, the patient may become anxious about the upcoming
seizure by sensing the aura and by remembering the previous frightening
seizures. In addition, the experience of fear or pain during a seizure may
cause anticipatory anxiety for new upcoming seizures. In case of generalized
tonic-clonic epileptic seizures, a patient may experience embarrassment after
consciousness is regained, because of the loss of control, the image of people
watching him / her when having a seizure, or incontinence. This may induce
anticipatory anxiety for recurrent seizures and in turn, may result in
avoidance of social situations (Beyenburg, Mitchell, Schmidt, Elgar, & Reuber,
2005). In asthma, wheezing is often a precipitant of an upcoming asthma attack
and by perceiving the wheezing, the patient may remember a previous frightening
attack, inducing anticipatory anxiety. Furthermore, the fear to die, the
unpredictability of seizures and attacks, and parental anxious reactions,
worry, helplessness, powerlessness, stress, and vulnerability may induce
anxiety in children with epilepsy and asthma as well.
Although anticipatory anxiety for seizures has frequently been mentioned in
epilepsy research, seizure-related anxiety seems understudied. One case study
of seizure phobia in a 26 year old woman, with generalized and complex partial
seizures, and auras has been described. This woman experienced *extremely
aversive physical experience of her seizures* and believed that people *would
be disgusted by the sight of her having a seizure* (Newsom-Davis, Goldstein, &
Fitzpatrick, 1998, p.104). She avoided (unfamiliar) situations she thought to
be dangerous and became hyper-vigilant for seizure precipitants. She was
successfully treated with 10 cognitive behavioral therapy sessions. Studies
considering psychological treatment of anxiety for attacks in children with
asthma, to our knowledge, have not yet been conducted. However, one case-study
reported about medical treatment of a panic disorder in a 6-year old boy with
severe asthma since the age of 3. The boy was successfully treated with
alprazolam and panic attacks stopped very soon after medication was started
(Baron & Marcotte, 1994). When released from the hospital his pulmonary
function was normal and within a one-year follow-up, no asthma attack occurred.
Panic disorder is a frequent co-morbid condition in asthma and the accompanying
hyperventilation can trigger asthma attacks (Baron & Marcotte, 1994; Feldman,
Siddique, Thompson, & Lehrer, 2009; Lehrer, Feldman, Giardino, Song, &
Schmaling, 2002).
Higher levels of anxiety or depression have been associated with more
non-compliance to medical treatment (DiMatteo, Lepper, & Croghan, 2000; Muller,
Koen, & Stein, 2005). Because of non-compliance, seizures and attacks are more
likely to occur and in turn, contribute to exacerbation of the anxiety. In
addition, anxiety has been found to worsen condition severity in children with
asthma (Bloomberg & Chen, 2005; Wood et al., 2007) and to reduce their quality
of life (Juniper, 1997). Moreover, emotional (stressful) events are related to
seizure frequency (Lathers & Schraeder, 2006; Nakken et al., 2005; Sperling,
Schilling, Glosser, Tracy, & Asadi-Pooya, 2008)
The clinical efficacy of eye movement desensitization and reprocessing (EMDR)
in posttraumatic stress disorder treatment for adults has been well established
(American Psychiatric Association, 2004; Bisson et al., 2007; Bleich, Kotler,
Kutz, & Shalev, 2002; Departments of Veterans Affairs and Defense, 2004; Dutch
National Steering Committee 2003; National Institute for Clinical Excellence,
2005; Sjöblom et al., 2003). Regarding children, a recent meta-analysis EMDR
has shown efficacious effects on trauma symptoms. The effect size for EMDR was
moderate when the effect of EMDR was compared to the effect of treatment as
usual or control groups receiving no treatment. Support for incremental
efficacy was found when EMDR was compared with cognitive behavioral therapy.
This incremental effect has to be interpreted tentatively as it was based on
two studies (Rodenburg, Benjamin, de Roos, Meijer, & Stams, 2009).
Little is known about treatment interventions for children with epilepsy or
asthma who are anxious for upcoming seizure or attacks. From pediatric
psychology literature, it seems that tailored interventions for this specific
population have still to be designed (Kean et al., 2006). That is, established
interventions (e.g. cognitive behavioral therapy and EMDR) for children with
PTSD should be adapted to pediatric populations with asthma or epilepsy. This
study intends to address this gap by examining the effect of EMDR on children
with seizures or attacks.

The effect of EMDR on seizure and attack-related anxiety in children with
epilepsy or asthma will be examined. This group consists of children who were
screened for having anxiety related to epilepsy seizures or asthma attacks in
the first part of the study. It is hypothesized that EMDR treatment will not
only result in anxiety or PTSD symptom reduction to non-clinical levels, but
will also improve the quality of life and medical status of children with
epilepsy or asthma.

See Method: design in Protocol

The EMDR treatment trial consists of 3 measurements: a pretest one week before
treatment (T1), the posttest one week after closure of EMDR treatment (T2), and
a follow-up measurement three months after EMDR closure (T3). Data collection
is conducted by the first author of this project. Therapists are provided with
intake information of the patient.

If, during the intake, children show clinical or sub clinical levels of anxiety
or PTSD symptoms which are related to having seizures or asthma attacks, they
are referred to the EMDR treatment. These children and their parents are
provided with an information letter, explaining that clinical anxiety or PTSD
symptoms related to seizures or attacks is established and that if they wish,
EMDR will be offered to treat the anxious feelings. Furthermore they are
informed about the purpose of the EMDR study. Later on, the parents will be
contacted by telephone and asked whether they and their child are willing to
cooperate in the EMDR treatment. If so, a consent form will be signed and
arrangements will be made.
Subsequently, children with clinical or sub clinical levels of anxiety or PTSD
symptoms related to seizures or attacks are treated with EMDR. One EMDR session
lasts for 60 minutes and the amount of sessions (3-5) is dependent on the
amount of distress associated with the disturbing memories related to seizures
and attacks. EMDR is given until there is no remaining distress associated with
the disturbing memories related to seizures and attacks, as indicated by a
child*s self-reported distress score of 0.
Before and after the EMDR treatment trial children and their parents will be
asked to fill in questionnaires concerning anxiety and their chronic condition.
If a child or its parents do not wish the EMDR treatment, they will be told
that they can ask for help at any time, by contacting their treating medical
doctor.

It is suggested that children and parents will perceive little burden to
participate in this study. Participation duration is 15 minutes in the
screening study and only if children indicate a high anxiety related to
seizures or asthma attacks, children and parents are invited for an intake with
the child psychologist (EMDR therapist). Parents and child have a few days to
decide whether they want to participate in the intake. The intake takes 90
minutes. Parents and child can subsequently decide whether they wish the child
is to be treated with EMDR. EMDR sessions take 60 minutes (the number of
sessions estimated: 3-5). As such, the child is treated with diagnosed anxiety
and treatment is common for clinical practice.
EMDR is an established, short, psychological treatment and it generates no
physical and psychological harm. No adverse effects of EMDR on epilepsy or
asthma have been reported (Dommerholt & Aelen, 2008; Rodenburg et al., 2009;
Schneider, Nabavi, & Heuft, 2005). Treating pediatricians and child
neurologists are informed about the client*s participation in the EMDR
treatment. At the treatment site a MD will be stand by to provide medical
assistance if necessary. Parents can contact an independent MD (not involved in
the research) for questions.