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Pathological Demand Avoidance in a population-based cohort of children with epilepsy: four case studies
Colin Reilly1, Patricia Atkinson2, Leanne Menlove3
1Research Department, Young Epilepsy, Lingfield, Surrey RH7 6PW, UK; Gillberg Neuropsychiatry Centre, University of Gothenburg, Kungsgatan 12, Gothenburg, Sweden.
Insights
Pathological Demand Avoidance (PDA) symptoms were found in 5% of children with epilepsy, significantly impacting their quality of life. These children also exhibited ADHD and other neurodevelopmental disorders, highlighting the need for PDA consideration in epilepsy care.
Area of Science:
- Neuroscience
- Child Psychology
- Pediatric Neurology
Background:
- Childhood epilepsy presents with diverse neurobehavioral comorbidities like ADHD and ASD.
- These comorbidities often impact quality of life more than seizures.
- Pathological Demand Avoidance (PDA) describes extreme resistance to demands and need for control.
Purpose of the Study:
- To investigate the prevalence and characteristics of Pathological Demand Avoidance (PDA) in children with epilepsy.
- To describe the neurobehavioral profile of children with epilepsy and PDA symptoms.
Main Methods:
- Population-based study of 85 children with epilepsy.
- Identification of children with significant PDA symptoms.
- Assessment using the Extreme Demand Avoidance Questionnaire (EDA-Q).
- Detailed case descriptions and diagnostic criteria (DSM-IV-TR) for comorbidities.
Main Results:
- Four children (5%) with epilepsy displayed significant PDA symptoms.
- All four children had cognitive impairment (IQ<85) and ADHD.
- Three met criteria for ASD and Developmental Coordination Disorder (DCD); two for Oppositional Defiant Disorder (ODD).
- Onset of seizures occurred before age 5 in all cases.
- Significant functional impairment and management challenges were reported.
Conclusions:
- PDA symptoms are present in a subset of children with epilepsy.
- PDA frequently co-occurs with other neurodevelopmental disorders in epilepsy.
- Consideration of PDA is crucial when assessing neurobehavioral comorbidities in childhood epilepsy.
Abstract:
Childhood epilepsy is associated with a range of neurobehavioural comorbidities including Attention-Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), motor impairments and emotional problems. These difficulties frequently have a greater impact on quality of life than seizures. Pathological Demand Avoidance (PDA) is a term increasingly in use in the UK and Europe to describe behaviours associated with an extreme resistance to demands and requests and the need to be in control in social interactions. In a population-based group of 85 children with epilepsy, four (5%) were identified as displaying significant symptoms of PDA, were assessed using the Extreme Demand Avoidance Questionnaire (EDA-Q) and are described in detail. As well as significant symptoms of PDA, the four children met criteria for a range of neurobehavioural disorders; all four had cognitive impairment (IQ<85) and met DSM-IV-TR criteria for ADHD. Three, in addition, met criteria for ASD and Developmental Coordination Disorder (DCD) and two for Oppositional Defiant Disorder (ODD). All four experienced their first seizure before 5 years of age. School and parent reports indicated very significant functional impairment and management concerns, particularly with respect to complying with everyday demands. Symptoms of PDA should be considered when evaluating neurobehavioural comorbidity in childhood epilepsy.
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