Abstract
Introduction: Abdominal wall hernia surgery aims to relieve symptoms and to improve quality of life (QoL). The aim of this novel patient led research, was to help surgeons understand how hernias impact on patients' wellbeing. Methods: A questionnaire was developed by patient advocates. It was promoted through social media to gather anonymous feedback from patients. Results: 264 questionnaires were completed. The majority of the respondents were female (78.4%, n = 207), from English speaking countries (85.2%, n = 225), and had either parastomal hernias (36.0%, n = 95) or incisional hernias (28.0%, n = 74). Respondents described how their hernia affected sexual intimacy, either due to the dislike of their physical appearance, pain or the practicalities of their hernia getting in the way. They reported that their hernia restricted them from engaging in certain exercise activities, and a significant proportion also reported an impact on their diet. Conclusion: This study has identified that in addition to functional problems, living with a hernia can affect mental health as well as social and physical relationships. Existing hernia QoL tools are limited in the outcomes that they measure. Without a comprehensive hernia specific QoL tool, it remains difficult for a surgeon to accurately assess the impact that different treatment modalities may have on patients.