Measuring quality of life in patients with abdominal wall hernias: a systematic review of available tools

Abdominal wall herniation (AWH) is an increasing problem for patients, surgeons, and healthcare providers. The incidence of ventral incisional hernia (IH) following major abdominal surgery is high, with rates of up to 20% following midline laparotomy [1, 2]. Advances in critical care and surgical technique are leading to improved survival following abdominal catastrophe in patients with multiple co-morbidities, with a resulting increasing burden of complex abdominal wall herniation (CAWH) [3]. Surgeons with a specialist interest in abdominal wall reconstruction within the context of a multi-disciplinary team (MDT), with careful recording of technique and outcomes [4, 5], are best suited to manage these complex patients.

Surgical-site infection, recurrence, length of stay, and mesh explantation are the most commonly utilised outcome measures in abdominal wall surgery, and these are improving, with many patients seeing excellent long-term results [6, 7]. However, a significant proportion of these operations are performed for symptom relief and to improve the quality of life (QOL). Despite this, QOL outcomes are recorded far less frequently than surgeon centred outcomes and surgical-site outcomes form the basis of the majority of publications from centres of excellence.

Assessment of QOL, both pre- and post-surgery, has been shown to be an important patient-reported outcome in all types of abdominal surgery [8, 9] and various tools are used. Generic QOL scoring systems have been used for many years, but disease-specific quality-of-life models are frequently more useful. A few data from specific AWH QOL-related studies exist [10, 11], and consequently, there remains an absence of consensus agreement surrounding the best way to measure QOL in AWH. Consistency in recording allows comparison between centres, techniques, and mesh type and position. The use of both generic and disease-specific QOL assessment tools is the current gold standard in surgery in general, and as such, a singly accepted tool for assessing QOL in AWH would appear to still be lacking. We hypothesise that there is no acceptable QOL assessment tool currently in use for patients undergoing abdominal wall hernia repair. The aim of this review is to systematically evaluate all currently available tools for measuring QOL (both generic and disease-specific) in this patient group to understand more thoroughly why this is the case.

A focussed, systematic review of the literature was conducted by the first author (T.G.) under the guidance of a qualified medical librarian, in keeping with the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines.

PubMed, MEDLINE, and EMBASE and Trip databases were used to search for comparative literature between 1st January 1990 and 1st May 2019. English language studies using quality-of-life assessment tools in abdominal wall hernias were included. The latest date for this search was 1st May 2019.

The final review included 32 articles from an initial 1502 search results. The aggregated data from all 32 articles can be seen in Table 2 in the supplementary material.

We found heterogeneity in the tools for assessment of QOL throughout the included articles. Seven used an abdominal wall-specific QOL tool, 11 used a hernia-specific QOL tool, 16 used a generic validated QOL tool, and 6 used a generic non-validated or independently devised QOL tool. Tool usage varied throughout the studies (see Table 1).

Abdominal wall reconstruction as a specialty in its own right is growing rapidly. Unlike other specialities, it mostly consists of elective cases performed to improve quality of life. This allows for thorough pre-operative planning and patient discussion. A systematic review undertaken by Jensen et al. [44] reviewed the then available QOL assessment tools and determined none were universally accepted. Despite the recognised need for a standardised method for quality-of-life assessment in AWR still, no one tool has become dominant. More recently, Sando et al. in 2020 have published a comprehensive systematic review assessing long-term patient-recorded outcomes from ventral hernia repair with mesh specifically. They have shown that some factors used for assessing QOL may have improved following surgery. A wide range and varied use of QOL assessment tools were again noted and drawing strong conclusions is perhaps impeded by difficulties in comparing outcomes because of this. This review was performed to provide up-to-date information with the emphasis on determining the use and acceptability of currently available tools for the AWH population to understand why this is still the case.

We have identified significant heterogeneity within the AWH literature with a total of 14 different QOL tools being used across 32 studies. Furthermore, we have seen two distinct sub-groups of studies; the first are studies using QOL tools to assess if repairing AWHs improves QOL in patients at all. The second utilise QOL tools to measure any difference in outcome between different techniques or interventions. Here, mesh position and plane development were frequently reported in studies comparing operative technique, but analysis of any relationship to QOL is frustrated by the absence of a common nomenclature to describe mesh placement [45]. It is somewhat surprising that this group only includes 14 studies given that presumed improvement in QOL secondary to surgery is one of the key factors in patient and surgeon decision-making. Timing of data collection and follow-up duration varied greatly across the studies, suggesting that optimum follow-up time also remains unclear.

Generic QOL tools provide a general overview of perceived QOL, whereas disease-specific surveys are useful in detecting the change in health and QOL as the result of a specific condition and/or the impact of a given focused treatment [39]. They are long established and widely accepted in their role measuring all health-related QOL. SF-36 and SF-12 have been used in the literature since 1989 with similar results [46]. They are extensively validated and give a ‘common language’ to researchers. They are adaptable and translatable within the general populations. However, their ability to assess specific pathology populations limited [47]. This was further highlighted by the National Health Service in the UK as part of their national patient-recorded outcome measures’ (PROMs) programme. It found, following a survey of 69,677 patients with inguinal hernia in 2016/17, that generic or non-hernia-specific PROMs were of limited value, and consequently, inguinal hernia was removed from the programme. AWH patients have different experiences both pre- and post-operatively compared to the daily lives of the ‘normal population’ [48] and have often suffered a significant surgical history with subsequent psychological impact [23]. Consequently, we have found in the last decade, hernia-specific QOL tools have gained popularity. In particular, CCS has been validated in large cohorts and shown to give a better representation of patients’ quality of life following hernia repair with mesh [11] and is preferable with patients.

Generic tools are still the most commonly used QOL assessment tools within the AWH literature. Where hernia-specific tools are used, it is often in combination with a generic tool; perhaps, to ensure that some comparable data are collected using the more validated, established method. Perhaps also highlighting inadequacies within the available disease-specific tools. General hernia-specific tools may be more focused than generic tools and their use is well established within the groin hernia literature [9]. However, we are concerned that they do not contain some specific domains important in the AWH population. We are also concerned that filling in two questionnaires is time-consuming for patients and may lead to a reduction in engagement and potential misrepresentation of outcomes. This has led to the development of AWH QOL-specific tools. Availability and uptake of AWH-specific tools have also been fairly limited. The European Hernia Society has developed and published the Eura-HSQOL in 2016 designed for use specifically in patients undergoing AWR as it was felt that other tools for evaluating QOL after hernia repair have not proven useful. This would appear to confirm a reluctance to consistently use other available tools. Unfortunately, its uptake has also been limited and it was not used in any identified studies within our review. Why utilisation and uptake remain low is unclear and from our review further research appears still required for using an AWH-specific tool. We suspect that this may be because AWH-specific tools still omit certain factors which may be important in measuring quality of life such as age, sex, co-morbidities, and smoking status. Furthermore, to our knowledge, they have all been developed by surgeons without patient input.

Patient-specific factors, behaviours, and co-morbidities are established contributors to QOL outcomes in major abdominal surgery, such as colorectal resections [48]. In this review, the majority of studies (26 studies) reported patient-specific factors separately including sex, age, BMI, diabetes, smoking, cardio-respiratory function, steroid use, previous surgery, and tobacco smoking. The most commonly used generic QOL tools do not collect these data when assessing quality of life. Whilst these demographics are not quality-of-life measurements in themselves, they can negatively contribute to increased post-operative morbidity, increased length of hospital stay, and increased risk of hernia recurrence [49]. Recurrence significantly negatively affects QOL and can reduce it to below pre-operative baseline [15, 24, 39]. Such factors appear correlated to QOL and measuring them may be useful. The impact of hernia size on QOL was poorly reported. Where compared large hernia size was seen to negatively impact on QOL. However, the literature is heterogeneous and often patients with different size hernias are bundled together. Patients with different hernia sizes have different expectations and experiences, and therefore, how their hernia impacts their QOL will differ. Current AWH QOL tools do not take into account hernia size or hernia defect size meaning that we cannot discriminate when comparing the tools. This makes interpreting results difficult and is a limitation of the currently available tools. Patient satisfaction is not included in QOL assessment tools, but has been reported in a number of included studies. While measuring patient satisfaction as a proxy of QOL may not be ideal, a satisfied patient may have perceived improvement in QOL relative to a dissatisfied patient. How a patient feels about their surgery could also introduce bias into their responses when completing a QOL assessment and as such should perhaps be accounted for.

Ability to work, and time to return to work are an important outcome measure for many patients and wider society as a whole. Many AWH patients are of working age and there must be a negative economic impact on them being unable to do so. Although work activities are included as a score in the ASS; occupation, demographics, significant other diagnoses, impact on body image, and co-morbidities are not accounted for in the CCS, HerQLes, or short-form surveys. Gender impacts scores in the SF-36 and SF-12 QOL assessment methods with women regularly scoring lower than men [50], but its impact on disease-specific tools is unknown. There is limited evidence in the literature on abdominal wall repair in pregnancy and no consideration or assessment of pregnancy, fertility, or fecundity in hernia QOL tools.

Ultimately, assessing QOL is a patient-reported outcome and as such is subjective. Factors impacting most greatly on QOL are likely to vary from patient to patient. Including aspects important to patients, rather than clinicians, can only be achieved through patient participation and involvement in developing a universally accepted tool. For some patients, certain factors will hold more weight than others and pre-operative discussion and decision-making should be focussed towards an individual patient expectations. Decision-making in AWH surgery remains difficult. This said, the use of such a suitable and acceptable universal pre-operative QOL measurement and/or being able to predict subsequent QOL improvements in patients undergoing successful surgery would aid decision-making for the patient and the surgeon. QOL measurement can and should be a valuable adjunct in decision-making.

This review highlights significant variation in the adoption and utilisation of QOL tools in the AWH literature. No one tool has become dominant in this field. Hernia-specific QOL tools are becoming more popular. However, the most frequently used scale is still the generic SF-36 most likely due to perceived inadequacies in hernia-specific QOL tools or fears that without a well-known, validated, established tool being used the data will not be published. Regardless of which tool is used, there may be key aspects to being an AWH patient that are still not being captured by any of them.

Assessment, therefore, of the impact of repair, or different techniques, on quality of life remains difficult. More work is required to refine and develop these QOL tools to help guide management and to embed validated, structured QOL measurement into patient and surgeon peri-operative decision-making. A single, user friendly, tool incorporating components from disease-specific and generic QOL tools that is can be used for a standardised period of long-term follow-up may provide this.