3.1 Participants

The consensus study recruited 25 patients, with 12 (8/12 female) participating in four virtual focus groups, median length 54 min (interquartile range 6 min). Three of the meeting included only UK participants, while one meeting was composed entirely of Dutch speakers. Further demographics and patient-reported surgical details are given in Table S2. Eight EPS complications were described: two infected pelvic collections, five chronic perineal sinuses and one episode of bowel obstruction.

3.2 Group Experiential Themes

Four themes were identified in each focus group [1]: ‘Out of Options’ [2]; ‘The New Normal’ [3]; ‘Symptoms’; and [4] ‘Information Influencing Adaptation’—see Figure 1. Table S3 presents these alongside sub-themes with illustrative quotes. It also includes polarising statements that highlight contrasting experiences.

3.3 Theme 1—Out of Options

Participants were aware that without PE prospects of survival were limited. They had to consider a radical solution, “If you don't have the operation, more than likely you will die anyway” (M2.1). This decision is stark, with few options available. Patients confronting their mortality was evident throughout, with innovations such as individualised 3D-renders of tumours, valued for making the threat clear, “I think it just came home to us when I saw that 3D scan…I've gotta have this. I have to have this operation” (M3.1).

Not all participants had time to consider their options, with awareness of the threat to life critical to going ahead with PE, “The tumour was growing, and I probably had two and a half weeks between the di-re-diagnosis and the surgery… I'd never heard of the operation… I just thought what it's gonna save my life. So no brainer” (M1.1). Participants were not only considering themselves, but also the impact on their families, “I had to have this operation. I had to be here this year for [daughter's] wedding” (M3.2). Patients are therefore forced to bravely accept the risks of surgery or face limited survival.

Positively making this decision and relinquishing control may lower anxiety, “…strange calmness came over me on the day of my operation…cause I was in the right hands” (M3.1). However, experiencing complications and a resultant lack of control was highlighted as problematic. Patients blamed themselves for issues, with unexpected morbidity inducing fear, particularly concerning the possibility of cancer recurrence, “It [chronic perineal sinus] had happened quite a long time afterwards… and you're thinking this is how my cancer started” (M3.2).

3.4 Theme 2—The New Normal

The magnitude of these decisions puts into context patients' expectations of EPS, they are aware their lives are unlikely to be the same. Indeed, it can be difficult to prepare for this new normal until it is experienced, “It a massive change to everybody's life after the operation, massive and whether you, it's something it's almost like having, ohh should I say this? It's like having a baby. You can prepare yourself to having a baby, but until you've actually experiencing it. You have no idea how you're going to deal with it” (M2.1).

These patients have no options, are subjected to enormous surgical trauma, and forced to come to terms with a different life—but they report recovery and adaptation, feeling their journey was worth it, with even those experiencing EPS looking forward to the future, “So I honestly a fluid person [infected pelvic collection and chronic perineal sinus] and it's going to be one of those things I'm gonna have to live with, but to me I'm alive and that's all that matters. So few pills down your throat each day and. Um. A pad to be worn. It's nothing to have the life to be able to enjoy with my daughter and getting married and things to look forward to” (M3.2).

Getting to a new normal was not linear; patients described recovery as a rollercoaster, starting with an impossible plunge beyond their tolerance thresholds, to the point where they thought they would die. This is a vulnerable time, when support is paramount, “I did ask [my partner] a couple of times when I came out of hospital. Am I gonna die? Cause I felt so rubbish” (M3.1). In the early phases it was not easy to discover even very simple activities were challenging, however, with time even strenuous pastimes may resume, “I could no longer sit down on a chair but now, none of that is a problem. I can ride a horse by myself.” (M4.2). It was notable that some patients did not experience such a rollercoaster, particularly when very symptomatic from cancer pre-surgery, PE was able to control and resolve these challenges, “And after the operation I was, I may say anyway, 90% of my pain was gone, so I'm content with my life now. Much Improved!” (M4.2).

These individuals have come through enormous adversity and display resilience to EPS complications, which may be experienced as just bumps in the road, “And yeah, so it [the chronic perineal sinus] was just another thing to face, but it was a minor thing to face after everything” (M3.2). There is likely to be a threshold of tolerance, however, with one participant seemingly adapted to a new normal, but now considering further surgery for an EPS complication with an uncertain outcome, “They don't know, they all don't know yet. That all needs to be sorted out. At least. If I say yes then I can have surgery possibly. But they can't say which way. They won't know until I'm on the operating table. And I'm like, yeah, should I do that? Because now I know what my condition is. And then it's just a question of how I'm going to come out of it? And what the complications are going to be?” (M4.3). They are reticent to go ahead as having been through a period of extreme adaptation, they are aware they would have to adapt again.

3.5 Theme 3—Symptoms

Patients described a variety of EPS symptoms, for some there was a sense part of themselves was no longer there and had been lost, “Superficially you feel nothing, but deeper you feel. But only [my surgeon] had said to me, because so many nerves have been cut and cut away. And also with the bladder is that, with me also a piece of sacrum was removed because there was a piece of tumour on the sacrum. The end time I was diagnosed with rectal cancer. And I also have absolutely no pelvic floor muscles left, so it's all, yes… Rectal amputation. Anal amputations. It's all closed up. It's very difficult” (M4.3). This loss and numbness when permanent can be a constant reminder of the trauma of PE, making it difficult to move on, “I can't feel that. Ohh yeah. Cause I had the operation, didn't I?” (M3.1). Conversely, reduced sensation may be beneficial for symptom control, “So that was an advantage. Because of that, I did feel it, but it was less pain. It's a weird explanation. But, yes.” (M4.1).

Patients described physical limitations, having difficulties sitting, mobilising, driving and with independence. Four were unable to work after PE, one due to a chronic perineal sinus, “I've had to give up again because obviously I can't work in that industry with health and hygiene purposes. So at the moment I'm not doing anything” (M3.2).

Two required interventional radiological drainage of pelvic collections, for one increasing their inpatient stay by 5 weeks, described as the lowest point in their treatment pathway. Five experienced chronic perineal sinuses, lasting from 7 months to 4 years post-surgery, either through the surgical wound or, in one instance, vaginally. Discharge was clear for most, but could be unpleasant and malodorous. In relation to their surgical reconstructions, participants with rotational flaps described problems lying flat and sitting. Some were conscious of cosmesis with one individual feeling almost dehumanised, “And the flap reconstruction further up is ugly done. It's like having a tail there. That I get a cow tail there like that” (M4.4). There were no reported issues relating to perineal mesh implants.

One individual had bowel obstruction describing a difficult experience exacerbated by not understanding what was happening, “Not knowing why because at the time you didn't know why. So it's quite horrendous,” (M2.1) this underpins the final theme.

3.6 Theme 4—Information Influencing Adaptation

Patient knowledge was important for adapting to complications. Some demonstrated detailed comprehension, “…part of the bowels, obviously dips, but because of that you have if you think in a sink system, you'd have a sump underneath. So your bowel comes in. What happens is this is where they thought the fluid and the infection. Might have come because he said if you think about sump in your sink, all the, all the bad stuff collects in that part of the bowel because it goes up and down and then obviously your bowel's permeable. So things can transit in and out of it and they think that might have been a reason for my recurrent infections” (M1.3). Conversely where patients lacked understanding more distress ensued, “I suddenly stood up and had this gush of fluid come out of me and nobody seemed to be concerned. And I don't know why it happens and no one can tell me why it happens. You know, they say we might dry up and I wish it would. I really wish it would, but unfortunately it doesn't” (M2.2).

Survivors' insight was highly valued and could provide bespoke support that clinicians were unable to offer, “I must admit when I read her story, I was like, no way. I'm not doing it. Do it and then I contacted her and she told me, it told me exactly how the operation was, but then said where there's a chance there's hope. And I just thought you that one sentence I just thought, right I'm doing it” (M2.1). This can have a powerful role linking back to the first theme where patients must balance length of life gained from PE against reduced HrQoL from complications, including EPS.

4.1 Study Limitations

The primary purpose of the overall study was establishing EPS consensus, with focus group meetings undertaken as part of this process to obtain patient perspectives—therefore the opinions presented are those of patients as research partners rather than participants recruited within the context of phenomenological research to determine their lived-experiences. There was no a priori decision to conduct qualitative analysis on focus group transcripts, with secondary analysis performed due to recognition of the richness and uniqueness of collected data. Consequently, important demographic information on educational and ethnicity, which are known to influence experiences of PE and surgical complications, was not collected [19, 22]. Without an agreed EPS definition at the time of focus group meetings an unstructured interview approach was necessary, which may have caused inconsistencies between groups and missed opportunities to further probe experiences.

Patients were challenging to recruit, necessitating a convenience sample of willing volunteers. Purposeful sampling would have been preferable; however, it was anticipated participant enrolment would be challenging. Despite multiple patient advocacy groups and all PelvEx Collaborators being invited to recruit patient representatives, there were only twelve participants in focus groups and a purposeful approach would have reduced this number further [4]. It is unknown whether patients had had particularly positive or negative experiences of PE. It is notable that rates of EPS were higher in this unselected cohort than those described in recent studies, although no patients suffering an enteric fistula were recruited [5]. Core outcomes of EPS were only agreed following focus group meetings and the testimony of participants that did not describe a specific EPS outcome was also included in this analysis, however gaining insight into what it is like to risk and avoid devastating complications supports putting EPS into context [4]. ‘Morbidity from reconstruction’ was deemed a critical outcome by the consensus study, all patients in this cohort had received some degree of reconstruction, and therefore understanding patient perspectives of the impact of these different strategies may support future improved shared-decision making. There were no negative experiences of biological mesh reported in this study, however there were functional and cosmetic concerns with flaps.

When understanding life-changing experiences IPA is ideal, although typically used for semi-structured interviews, it can be used in focus groups with adapted analysis [18]. In this case a modified approach was required as transcripts were analysed together, meaning only group experiential themes were generated rather than the personal experiential themes. From a reflexive perspective the primary researcher was a surgical academic with in-depth understanding of PE, this had an unknown impact on the unstructured interview style and subsequent IPA.

4.2 Clinical Implications and Ongoing Study

With these limitations the results may not provide a true reflection of patient perspectives in this group, it is impossible to generalise, or claim data saturation. However, in the context of no other qualitative studies investigating EPS, this novel IPA has informational power, advancing the understanding of how these under-researched patients may experience these life-changing complications [23]. Convenience sampling yielded a multi-site cohort of extraordinary patients as part of a consensus study, delivering a precious rich qualitative patient-voice that would have otherwise been unexplored.

This novel approach mitigates against the loss of a formal qualitative round of data collection that is usual in a modified-Delphi. It has streamlined ongoing robust qualitative inquiry by directly informing the semi-structured interview schedule of an actively recruiting project that collects data on education and ethnicity, considers insider-bias, and purposively prioritises patients with rare or severe EPS complications, such as an enteric fistula (see Supporting Information S2). This ongoing IPA work will facilitate confirmation or refutation of the themes described here, and encompasses mixed-methods to benefit from both idiographic and nomothetic insights [18, 24].

4.3 Conclusions

There is international consensus that further research into the impact of EPS on HrQoL is needed [4]. This is the first qualitative study to begin to explore these issues, providing initial insight, and facilitating where further qualitative study is required to rigorously explore the preliminary themes reported.

EPS is a significant cause of morbidity following PE, causing physical limitations and unpleasant symptoms that may include phantom phenomenon. It may impact decision-making, regret, adaptation, and information seeking. Patients are out of options when contemplating PE, forcing acceptance of EPS risks. The new normal patients experience following PE can be undermined by EPS, particularly when they and their caring teams do not understand exactly why these complications occur.