Development of a questionnaire to measure patient-relevant needs and benefits in the treatment of epilepsy (PBI-Epilepsy)

[Display omitted] •Goals in epilepsy treatment differ across patients and should be assessed individually.•Patients report on a range of issues that are relevant to people with epilepsy in their treatment.•We newly developed the PBI-Epilepsy.•Two versions exist: one for patients receiving medical treatment and one for those undergoing surgery.•The questionnaires asks about specific treatment goals and about achievement of these goals. Therapeutic goals in epilepsy treatment may be highly individual. The aim of the present study was to develop a questionnaire assessing patients’ needs and benefits of epilepsy treatment, the Patient Benefit Index on Epilepsy (PBI-Epilepsy). We recruited adult patients during their stay at a university based epilepsy centre. Patients completed a survey asking about their burden and treatment goals. Data were categorised using qualitative content analysis. The final category system was discussed in an expert panel. The questionnaire was pre-tested using cognitive debriefing and adapted until no changes were required anymore. In the open survey, 25 people with epilepsy participated (60.0 % female, 33.2 years, 1–55 years epilepsy). The final category system included nine main categories (namely psyche, working life, seizures, therapy, leisure activities, social relationships, mobility, body, everyday life activities). From this, the expert panel developed a first draft of the PBI-Epilepsy. The questionnaire went through five rounds of cognitive debriefing with 29 patients (51.7 % female, 34.6 years, 2–37 years epilepsy). We decided to develop two versions of the questionnaire depending on the patient’s treatment (medical or surgical). A bipolar response scale was used in the part asking about treatment benefits, as epilepsy treatment can lead to both improvement and deterioration. The final questionnaire consists of two parts (patient needs and treatment benefits) each encompassing 21 items. We aimed to reflect the wide range of issues that are relevant for people with epilepsy while developing a questionnaire that is short and easy for patients to understand.