Patient information leaflet feedback on delusional infestation

Abstract

BACKGROUND: Delusional infestation, also known as Ekbom syndrome and delusional parasitosis, is a poorly understood condition often surrounded by misinformation. Patients and their families frequently encounter scepticism regarding their experiences. This research aimed to create a patient information leaflet (PIL) with a patient-centred approach and to gather feedback on its usefulness for sharing information and validating their experiences. OBJECTIVES: To evaluate patient feedback on a newly developed PIL designed for individuals with delusional infestation, assessing its perceived usefulness and impact. METHODS: A survey was administered to 18 patients before their appointments, incorporating the new PIL. The survey included questions on the leaflet's clarity, usefulness, ability to validate patient experiences and other pointers, measured on a 10-point Likert scale (0 = no comment, 1 = strongly disagree, 10 = strongly agree). Data were analysed using descriptive statistics and factor analysis. Additionally, the final question allowed for written feedback, which was examined through thematic analysis. RESULTS: The survey results revealed that the majority of patients were satisfied with the new PIL. Specifically, 94% (17/18) agreed or strongly agreed that the leaflet was logical and easy to follow, 72% (13/18) found it useful for understanding their condition, and 78% (14/18) felt it validated their experiences. Mean scores for these concepts were 8.83 (SD 2.97), 7.61 (SD 1.93) and 7.78 (SD 1.91), respectively. Thematic analysis of written feedback highlighted themes of improved understanding but uncertainty around acknowledgement of experiences. CONCLUSIONS: This new patient-centred PIL for delusional parasitosis was well received, indicating its potential as a valuable tool for patients and their support networks. By addressing the specific needs and experiences of patients, the leaflet can improve communication and reduce the stigma associated with the condition. Future research should explore long-term impact and the effectiveness of similar resources in other patient populations.