Abdominal wall hernia surgery aims to relieve symptoms and to improve quality of life. Being predominantly elective surgery, this allows for preoperative time to plan and focus on patient priorities. Through understanding how a hernia affects the patient’s QoL, the surgeon can assess the impact that any potential surgery may have on them. Although hernia specific QoL tools exist, none are universally accepted (1), and most have been developed without patient input (2). Within hernia research, generic QoL tools are often used, however as not disease specific these may not capture key aspects important to patients with hernias (1).

This patient led study aims to form a greater understanding of how abdominal wall hernias impact on patients’ wellbeing, and to evaluate whether existing QoL tools ask the questions important to patients.

The patient representatives of the British Hernia Society (BHS) were invited to present at the European Hernia Society (EHS) conference 2022, on the patient’s perspective of living with a hernia. The representatives chose to specifically focus on topics not traditionally discussed in QoL surveys, including sex, alcohol consumption, diet, and exercise.

In preparation for the conference, a 25-question patient questionnaire was developed by the patient authors using Google Forms. The authors invited three patients with different hernia types (incisional, inguinal and hiatus) to test the questionnaire and provide feedback on ease of completion, clarity of the questions, whether the questionnaire was suitable for their hernia type, and if they wanted any other questions included. Based on their feedback, the questionnaire was refined. A copy of the survey is shown in Supplementary Appendix SA1.

The questionnaire was publicised on social media. Tweets were made on Twitter using the personal profiles of the authors, these posts were retweeted by other patients and surgeons. Posts promoting the questionnaire were also made within Facebook patient support groups relating to abdominal wall hernias or stomas. The groups were selected based on their number of members. Support groups relating to the use of surgical mesh were excluded, to ensure that the results focused on living with a hernia, and not the outcomes of surgery. Some support group administrators did not respond to the request for the link to be posted within their group, none directly declined.

As this research was patient led, without the support of an institution or organisation, no ethical approval could be sought from a research ethics committee. Patients were invited to voluntarily complete the questionnaire; they were informed that their anonymised answers would be presented to surgeons, to help them gain a greater understanding on how hernias can affect a patient’s physical and emotional wellbeing. Implied consent was gained when the patients completed the questionnaire.

At the beginning of the questionnaire, patients were warned that some questions may be emotionally difficult, and at the end there were links to support groups for alcohol or substance use.

The survey was promoted over a 6-week period in March and April 2022. Participants completed the survey using an anonymous link, with the option to provide an email address to receive a summary of the results. Respondents who have already had hernia surgery, were asked to complete the questionnaire based on their experiences prior to this surgery.

The results were exported from Google Forms, analysed in Microsoft Excel by SH, and shared with JB for verification. Free text quotes were selected through manual thematic analysis, to ensure all themes were represented, across all hernia types.

DS was later invited to proof read the article and provide guidance on the submission process for publication. DS offered advice only, with all decision making and analysis performed by the patients themselves.

Only through using validated disease specific QoL tools, which ask questions that are important to patients, can outcomes for different treatment modalities be properly assessed. The literature review by Smith (2) identified six abdominal wall hernia specific QoL tools, each being used to assess different populations, none are universally accepted (1). The measurements covered within these abdominal wall specific QoL tools are summarised by the authors in Table 2. None of these tools cover parastomal hernia specific concerns.

This research highlights how existing hernia QoL tools may be limited in the outcomes that they measure. The World Health Organisation (WHO) states that an individual’s QoL incorporates “physical health, psychological state, level of independence, social relationships, personal beliefs, and their relationship to salient features of the environment” (3). Despite this, only one of the existing hernia QoL tools covers mental health, and there is little coverage of an individual’s social wellbeing or the impact their hernia has on sexual relationships (Table 2). Even if generic QoL tools are used in conjunction with hernia specific QoL tools, neither of the commonly used SF-36 (short form 36) and SF-12 (short form 12) surveys cover appearance, sexual intimacy, or diet.

One major function of the abdominal wall is to maintain the anatomical position of the lower digestive organs, it is also involved in the defaecation process (4). Within this study, forty-three percent of patients described how they restricted their diet to manage their bowels, to either reduce pain and bloating, minimise the risk of bowel obstructions or reduce the number of bowel movements. Eating is not just fundamental for life, it goes well beyond physical health. Food is an important part of cultural heritage and national identity, it brings friends and families together (5). Additionally, diet can be used as a tool to manage emotions, like anxiety, stress and depression (6). Interestingly, none of the existing hernia QoL tools directly asked about diet.

Seventy-one percent of respondents who adapted their diet, reported that their diet was now healthier. However, there was insufficient information from those respondents to verify their judgment, and there is the risk that those respondents eating an “easily digestible,” “clean” or “plain” diet are missing key nutrients. Reasons for an unhealthier diet, included being in low mood, reduced mobility and maintaining a low fibre diet. Optimising preoperative nutrition is key to improving recovery after surgery (7). Although further research is needed to understand how a hernia may affect patients’ diet, this study highlights how surgeons may need to assess their patient’s diet and offer support either with healthy eating advice, or through assessment and support from a dietitian.

Although it is recommended not to consume excess alcohol (8), drinking alcohol is a social activity for many, with alcohol playing a role in many social events including parties and celebrations, where psychological benefits include relaxation and increased sociability (9). With twenty three percent of the respondents who consumed alcohol saying that their hernia had a negative impact on their ability to tolerate alcohol consumption, the use of alcohol should be considered when designing QoL tools. This could be asked indirectly within a QoL tool when discussing social activities.

Thirty seven percent (n = 98) of respondents said that they had been advised to avoid certain exercise activities, whilst others chose to avoid specific exercises due to fear of making their hernia worse. Further research is needed to understand who is advising those restrictions, whether they are medically correct, and whether with support from surgeons or physiotherapists those restrictions could be lifted. Healthcare professionals could also offer practical advice, such as the use of comfortable support garments, for patients whose exercise is restricted due to the practicalities of their hernia getting in the way.

Several existing QoL tools cover exercise, however they tend to focus on pain and the ability to exercise, maybe this is because exercise is recognised as important for physical health and prehabilitation. However, not being able to exercise may also have repercussions on an individual’s mental health and social wellbeing, particularly if unable to participate in team sports, or group activities like golf or dance which involve significant social interaction.

Sex, intimacy and relationships are an important aspect of social and mental wellbeing (10) but are only covered by three of the hernia QoL tools. Fifty eight percent of respondents to this questionnaire said that their hernia had a negative impact on their sex lives, mainly due to their physical appearance, pain and the practicalities of the hernia getting in the way. Whilst often viewed as a taboo subject, patients waiting for surgery may benefit from practical support such as information on different sex positions, advice on pain management, comfortable support garments or details of flattering underwear. Patients also want to know if their hernia surgery may impact on sexual function (11). Some patients may need counselling, particularly if their hernia was due to trauma, a traumatic event or cancer, as their physical appearance may be a reminder of an event or disease (12). Expectations post-surgery need to be managed, as the patient will continue to have scars and their abdomen may still lack uniformity after the hernia has been repaired, and pain may continue and is reported in up to 23% of patients (13).

The question whether “watchful waiting” is unethical, was raised by one respondent, particularly for large incisional hernias which are known to increase in size over time (14) and may result in a more complex repair. Although a hernia may be classified as asymptomatic from a medical perspective, this research shows how the hernia may impact on the patient’s mental health as well as social and physical relationships. Weight loss is a common reason for delay in hernia repair, however without the appropriate support, the patient may experience a decline in physical health due to reduced physical activity and possibly poor nutritional intake.

This research is a subjective study exploring aspects of QoL deemed important to the patient authors, covering topics which are frequently missed or glossed over in current hernia QoL tools. The results have shown that these aspects are also important to a significant proportion of the surveyed population. However, it is recognised that the respondents to the questionnaire may not be representative, as patients with symptomatic hernias are more likely to be active members within support groups or may be more motivated to respond to help others.

Further limitations lay in the design and distribution of the study. The survey was written by patient authors who have limited experience in research design, and the survey was distributed through social media, which although a useful tool when accessing large populations (11) this may influence the demographics of the respondents.

There is a risk of confirmation bias in the patient quotes selected, the authors have attempted to address this shortcoming through selecting a diverse range of responses covering all hernia types.

This research has shown how hernias impact on exercise, sex and diet, and how that may have repercussions on mental health as well as social and physical relationships. Without a comprehensive hernia specific QoL tool, which includes these factors, it remains difficult for a surgeon to accurately assess the impact that different treatment modalities may have on patients.