Listening to anxiety in persons with epilepsy. Development of an integrative assessment model based on qualitative interviews

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ObjectiveThe differentiation and assessment of anxiety in persons with epilepsy is the subject of current research. There is no consensus on which forms of anxiety are epilepsy-specific, what pathological significance they have, and how they should be conceptually systematized. The aim of this study was to detect formal landmarks that organize and further distinguish the clinical multitude of epilepsy-related anxiety, thereby establishing a basis on which an integrative assessment of epilepsy-specific fears can be developed. MethodTwenty-six patients with epilepsy-related fears were recruited for qualitative interviews at the Epilepsy Center of Freiburg in Germany. Prevalent types of anxiety included both periictal and interictal anxiety. Patients reported how living with epilepsy is associated with anxiety and to what extent. After an open interview, semi-structured questions were asked concerning epilepsy-specific anxiety, referring to established concepts and items. The contents of the interviews relating to anxiety were transcribed. ResultsThe reported fears associated with epilepsy reflect the individual “pathography” of each patient. The potentially anxiety-inducing events within this pathography include the first seizure(s), especially in cases involving the amygdalae; the process of diagnostic procedures; therapy, including side effects of antiseizure medication, surgery as a therapeutic option, or a difficult physician–patient relationship; and the further course of the disease, including the fear of disease progression with brain damage, cognitive deterioration, or professional and social disintegration. The integrative assessment model derived from the pathography of the interviewed patients thus reflects the dynamics and quality of epilepsy-specific fears, especially in relation to the healthcare system, without instantly pathologizing them. It highlights that anxiety, to a variable degree, is perceived as an adequate and comprehensible emotion and might be a problem long before the diagnosis is made in the case of ictal fear. Furthermore, anxiety symptoms may (re-)emerge, consolidate, modulate, diminish, or even aggravate during the course of the disease. The integrative assessment model maps crucial events inherent to the healthcare system that may become relevant as objects of prevention, intervention, and therapy. ConclusionThe integrative assessment model can serve as a heuristic framework from which an integrative self-report questionnaire of epilepsy-specific anxiety might be designed. On the one hand, this would help to better understand the interrelation between epilepsy and anxiety in terms of their temporal occurrence and interdependence scientifically. On the other hand, it would allow for the enhancement of individual preventive and therapeutic measures for affected patients.