We undertook 31 semi-structured interviews between May and November 2023, with patients who had surgery for POP, SUI, or MC. Ethical approval for this study was granted by the Health Research Authority (323441) and Leeds Beckett University ethics committee.

Two women with lived experience of adverse outcomes following urogynaecological surgery were co-applicants on the APPRAISE study. A further five PPI members, who had all undergone surgery for either POP, SUI or MC, shaped the wider APPRAISE project throughout by providing feedback and comments on participant facing documents, coding frameworks, data analysis and draft PROMs. In this study, PPI members helped develop the topic guide for the interviews, and one participated in a pilot interview which resulted in changes to the topic guide and recruitment procedures.

We undertook purposive sampling to recruit patients from the three surgical groups (i.e., POP, SUI, MC), aiming for 10 from each group. We also aimed for diversity in terms of socio-demographic characteristics (i.e., age, ethnicity and socio-economic background), outcome of surgery (i.e., positive, negative, mixed), and timing of interview post-surgery so we could explore both short term (i.e., <6mth months) and long-term (i.e., > 6 months) outcomes. To be included in the study, participants had to: i) have had surgery for POP or SUI either with or without the use of mesh [M]), or experienced mesh complications resulting in surgery (MC); ii) have had surgery at least 6 weeks previously and no longer than 20 years previously, iii) be 16 years or older (although we acknowledged they would likely be older than this) and, iv) had not previously taken part in a qualitative study about experiences of having these conditions or surgeries.

We recruited participants to the study from two sources. First, from three NHS Trusts in geographically diverse parts of England. POP, SUI and MC surgeons, sometimes with research nurse support, identified potential participants who met the inclusion criteria from review of referral letters to clinics, patients notes and surgical databases indicating where patients had relevant previous surgical procedures. Purposive sampling was undertaken to try and include patients with protected characteristics who are under-represented in urogynaecology research including patients from black and world majority backgrounds and those with gender dysphoria. Patients identified as having had relevant surgical procedures were provided with information about the study and a ‘consent to contact’ form. Those who were interested and completed the form were then contacted by members of the research team to check their eligibility for the study and, if they met the criteria, they were recruited for interview.

Second, information about the study was shared by community organisations (i.e., on their social media platforms, newsletters, and mailing lists). These organisations included: Sling the Mesh; MASIC Foundation; Bladder and Bowel Community; Bristol Mesh Centre; Pelvic Obstetric and Gynaecological Physiotherapy; Mesh Rectopexy Support and Action Group; and Bladder Health UK. Recruitment was also attempted through community organisations for people from ethnic minority communities or with physical disabilities or learning disabilities to try to ensure representation from underserved groups, but this was unsuccessful. Recruitment took place between May and October 2023 and interviews took place between June and November 2023. All of those recruited who met the sampling criteria were interviewed. All participants gave written informed consent.

One researcher (JC) undertook all interviews. The majority (n = 27) were conducted over the phone, and the remainder (n = 4) using online video conferencing software. The interviews lasted between 38 and 1 h 54 min, with an average time of 1 h 4 min. It was not uncommon that this interview was the first time some participants had been given the opportunity to talk about their experiences of their conditions, symptoms and surgeries. As such, many participants relished the opportunity to tell their stories and to be heard, and others stuck to the topic guide without much elaboration. This is reflected in the disparity in interview length.

The topic guide included questions about: the type of surgery; what problems they were having that led to the surgery, and the impact these problems had on their life; what they had hoped and expected from the surgery; whether this was realised; the impact of the surgery on their QoL (positive and negative); and any additional problems or benefits that they experienced following surgery (in the short- and long-term). We focus on the findings relating to these aspects of the interview in this article. We also asked about: their experiences with healthcare professionals and hospital care; their preferences for the format of a new PROM; and any perceived barriers and facilitators to PROM use. This latter focus on facilitators and barriers to PROM use will be reported in a future article. If participants had more than one surgery, we focused on the most recent but with reference to other surgeries if the participant felt this was important. For instance, those who had MC surgery most recently often wanted to discuss their previous M surgery and the impact it had on their QoL, which ultimately led to their decision to have MC surgery.

The interviews were transcribed verbatim, and any identifying material was removed. Data collection and analysis were carried out concurrently. Framework analysis (FA) was adopted because “it is flexible, systematic, and rigorous, offering clarity, transparency, an audit trail, and theme-based analysis” (32). In the first stage of FA, JC checked transcripts for accuracy, imported them into NVivo Release 1.6.1. and then began familiarising herself with the data (33). Following this, the data were divided into sections and recurring themes were identified for inclusion in an a priori framework.

The initial framework contained broad themes/topics such as clinical problems, outcomes of surgery, pain, psychological/emotional impacts, and role functioning. FA permits the expansion and refinement of existing themes, as well as the incorporation of new themes as analysis progresses and new data is incorporated into the dataset (34). JC coded the transcripts into the framework which was expanded and refined with each interview based on discussions with GLJ. This continued until data saturation, i.e., “the point at which additional data do not lead to any new emergent themes” was reached (35). In this instance, we used code frequency counts, and later theme frequency counts, to establish when no new codes or themes were being generated and when data saturation had been reached. Discussions about the introduction of new themes and sub-themes and potential items for the PROM were ongoing with the team throughout the analysis. FTP later refined the themes for this article further, working from the initial coding framework.

Ninety-five people expressed an interest in taking part in the study and 31 were interviewed. After 20 interviews, gaps in relation to the purposive sampling strategy were considered and efforts made to fill these gaps (e.g., younger people, disabled people, people from a minority ethnic group). Participants’ ages ranged from 35 to 74; the majority were White British with three from ethnic minority backgrounds; area deprivation ratings (acquired using postcode data) ranged from Decile 2 (deprived) to Decile 10 (affluent) with 6/31 in the socially deprived deciles 2–4 (36). Eight participants had other health conditions and/or disabilities including, but not limited to: spina bifida, fibromyalgia, anxiety, depression, migraines and irritable bowel syndrome. Please see Table 1 for further details of all the above.

In the following sections, we report the nine themes that impact QoL following surgery for POP, SUI and MC. The themes and sub-themes are: short-term impacts of surgery; long-term impacts on pre-surgery symptoms (sub-themes: urine and faecal stress/urge incontinence, prolapse bulge/protrusion, and mesh complications); pain and/or discomfort; impact on daily activities (sub-themes: fatigue, physical activities, caring roles, household responsibilities, and financial resources); social and leisure activities (sub-themes: leisure activities and social life); emotional wellbeing (sub-themes: mental health, embarrassment, anxiety, self and identity, and autonomy); sexual activity; personal relationships; and work/education. These themes have informed the domains and items for the POP, SUI and MC PROM, which is currently being developed. Table 2 shows the themes and sub-themes, with illustrative quotations derived from the data.

Throughout the findings, we focus on QoL post-surgery, although in places it is necessary to describe pre-surgery experiences to compare outcomes. Table 3 maps the QoL themes against the patients for whom there was an improvement post-surgery, and patients for whom it remained a burden, worsened, or new issues developed post-surgery. Table 3 also includes descriptive statistics to demonstrate how data saturation was monitored and to highlight the range of positive and negative outcomes reported by participants. Where no condition/surgery is specified, the data is representative of all three patient groups (POP, SUI and MC) such that at least one participant from each patient group reported a problem related to that theme post-surgery. Where there is an identified difference between the patient groups, this is reported.

This study aimed to identify all aspects of QoL that may be impacted by surgery for POP, SUI and MC, to inform the development of a new PROM. We identified nine themes for potential inclusion in the PROM, indicating that the potential impact of pelvic organ surgery for SUI, POP or MC on quality of life is multidimensional and complex.

The impact of surgery on the thematic areas of QoL which were identified could be positive, negative, or mixed. Those participants whose surgery was successful mostly described an improvement in many of the QoL themes. For some participants, post-surgery complications and recovery had a more negative impact on the QoL themes than they expected, but their outcomes were generally positive in the long term. However, some participants described many aspects of their QoL as being worse than before surgery, primarily, but not confined to, those who had some form of mesh surgery. It is important to note however, that those who had MC surgery did describe some improvements (e.g., pain) and attributed their poor overall QoL to their previous mesh surgery and the negative impacts this continued to have, even following corrective MC surgery.

Our research resonates strongly with other qualitative studies that have been undertaken with patients having surgery for POP, SUI and MC. These studies identified the impact of adverse events immediately post-surgery (23) and the functional effect of symptoms longer term on multiple life domains including psychologically, socially, sexually, and physically (18, 23, 24). Most of these studies focused on one type of surgery only, particularly mesh surgery (15–19, 21). Our study complements these existing studies by highlighting themes that resonate across a range of conditions and surgeries.

To improve quality of care, it is necessary to examine and understand the relationship between dimensions of health-related quality of life (HRQoL) (37). When compared to the most widely cited model of HRQoL developed by Wilson and Cleary (38), we can see that our findings support their assertions of a relationship between condition and associated symptoms, functioning, health perception and QoL in both a positive and negative way. Likewise, we show the dominant pathway from symptoms, through functioning, to perceptions of wellbeing. Our analysis also revealed evidence of multi-directional associations. We found that as well as symptoms (e.g., pain) impacting on functioning, the inability to function and the losses associated with this (e.g., social, leisure, roles) impacted psychological well-being, which further impacted on functioning and overall QoL, which may or may not be improved with surgery.

The impact of symptoms and limited functioning on the participant's concept of self (i.e., their identity, feeling abnormal, loss of confidence and self-esteem) was not explored in Wilson and Cleary's model but was indicated in Ferrans et al's (39) updated model, which explored the impact of both individual and social or environmental characteristics on domains. Our study adds to the Wilson and Cleary model by showing that a person's ability to perform a task can be affected by psychological as well as physical barriers. Shame, embarrassment (i.e., how they feel they will be perceived by others) and anxiety meant that participants in our study were ‘able’ to perform a task but often chose not to because of psychological barriers.

Of note is the potential differential impact of functional losses dependent upon a person's age, personal circumstances and their values and beliefs. Our analysis indicated there may be a greater impact of the condition, and outcome of surgery, on young women as they could be wanting to extend their family, be looking after young children, be at the start of their careers, and be more inclined towards vigorous exercise, which they have had to give up. Being unable to partake in sexual activity could be devastating for some, and inconsequential for others. We found that older participants seemed more likely to accept their condition/symptoms as a ‘natural part of aging’ and would have lower expectations regarding their functional abilities. This could be explained by the importance of a person's values and expectations, and any PROM would need to be able to address this differential (36).

It was our intention to recruit a diverse sample to the study. We succeeded in recruiting patients from different sources, of different ages, from diverse social backgrounds, with disabilities/co-morbidities, and who had a range of conditions and surgeries. However, despite our efforts, we recruited few women from ethnic minority communities. This is a shame because, as is widely reported, ethnically minoritised women are more likely to experience health inequality across their life course and continue to be underrepresented in health research (40, 41).

It is important to note that self-selection bias (i.e., people choosing to take part because they had specific experiences and wanted to tell their story) may have played some part in recruitment for this study. For instance, participants who were recruited through community organisations mostly reported problems post-surgery and subsequently, there may be an over-emphasis on the negative aspects of QoL in our findings. However, self-selection bias may also be true of those recruited through the NHS hospitals, and indeed anyone who chooses to take part in any research (both qualitative and quantitative) of their own volition, as per ethical requirements (42). We consider it a benefit of the research that the full spectrum of experiences is represented, particularly because part of the rationale for developing a new PROM was to ensure that adverse outcomes could be identified.