Janke Toni Maria, Cuny Jeanne, Blome Christine, Wittig-Moßner Doris, Hamer Hajo
Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany.
Epilepsy Center, Dept. of Neurology, University Hospital Erlangen, Erlangen, Germany.
Epilepsy Behav. 2025 Jan;162:110152. doi: 10.1016/j.yebeh.2024.110152. Epub 2024 Nov 29.
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.
癫痫治疗的目标可能因人而异。本研究的目的是开发一份问卷，用于评估癫痫治疗患者的需求和益处，即癫痫患者益处指数（PBI-Epilepsy）。
我们在一家大学癫痫中心招募成年患者。患者完成了一项关于其负担和治疗目标的调查。使用定性内容分析法对数据进行分类。最终的分类系统在专家小组中进行了讨论。通过认知反馈对问卷进行预测试，并进行修改，直到无需再做更改。
在开放式调查中，25名癫痫患者参与（女性占60.0%，年龄33.2岁，癫痫病程1 - 55年）。最终的分类系统包括九个主要类别（即心理、工作生活、癫痫发作、治疗、休闲活动、社会关系、行动能力、身体、日常生活活动）。据此，专家小组制定了PBI-Epilepsy的初稿。该问卷对29名患者（女性占51.7%，年龄34.6岁，癫痫病程2 - 37年）进行了五轮认知反馈。我们决定根据患者的治疗方式（药物或手术）开发问卷的两个版本。在询问治疗益处的部分使用了双极反应量表，因为癫痫治疗可能导致改善和恶化。最终问卷由两部分组成（患者需求和治疗益处），各包含21个项目。
我们旨在开发一份简短且患者易于理解的问卷，同时反映与癫痫患者相关的广泛问题。
