Quality of Life With a Hernia-A Novel Patient Led Study.

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.

Patient Views Around Their Hernia Surgery: A Worldwide Online Survey Promoted Through Social Media.

Introduction: Hernias are one of the most common surgical diagnoses, and general surgical operations are performed. The involvement of patients in the decision making can be limited. The aim of this study was to explore the perspectives of patients around their hernia and its management, to aid future planning of hernia services to maximise patient experience, and good outcomes for the patient. Methods: A SurveyMonkey questionnaire was developed by patient advocates with some advice from surgeons. It was promoted on Twitter and Facebook, such as all found "hernia help" groups on these platforms over a 6-week period during the summer of 2020. Demographics, the reasons for seeking a hernia repair, decision making around the choice of surgeon, hospital, mesh type, pre-habilitation, complications, and participation in a hernia registry were collected. Results: In total, 397 questionnaires were completed in the study period. The majority of cases were from English speaking countries. There was a strong request for hernia specialists to perform the surgery, to have detailed knowledge about all aspects of hernia disease and its management, such as no operation and non-mesh options. Chronic pain was the most feared complication. The desire for knowledge about the effect of the hernia and surgery on the sexual function in all age groups was a notable finding. Pre-habilitation and a hernia registry participation were well-supported. Conclusions: Hernia repair is a quality of life surgery. Whether awaiting surgery or having had surgery with a good or bad outcome, patients want information about their condition and treatment, such as the effect on aspects of life, such as sex, and they wish greater involvement in their management decisions. Patients want their surgery by surgeons who can also manage complications of such surgery or recommend further treatment. A large group of "hernia surgery injured" patients feel abandoned by their general surgeon when complications ensue.