Participants' experiences of the management of screen‐detected complex polyps within a structured bowel cancer screening programme

Abstract Background The Bowel Screening Wales complex polyp removal service was introduced to address variations in surgery rates for screen‐detected complex benign colorectal polyps, to improve the quality of the screening service and to make management of these polyps more equitable across Wales. Little is known about patient experiences and the potential impact on quality of life when undergoing complex polyp removal. This study is part of a wider research programme evaluating the decision‐making, pathways and outcomes from complex polyp removal. Objective This study aimed to understand experiences of having a complex polyp removed and how this may influence quality of life. Design Semi‐structured telephone interviews were conducted, and a thematic approach was used for data analysis. Setting and Participants All participants had a complex polyp removed after a positive stool test and review by Bowel Screening Wales' Network Multi‐Disciplinary Team. Results Twenty‐one participants were interviewed. Most participants had their complex polyps removed endoscopically and reported no or minor problems or negative outcomes following their procedure. For a small minority, worse problems (e.g., pain, bowel dysfunction) and negative outcomes (e.g., cancer) followed their procedures. Most participants felt supported and reassured throughout their procedures. Any physical and emotional changes to quality of life were mainly linked to procedure outcomes. Discussion Experiences of complex polyp removal were generally positive, with minimal changes in quality of life. Conclusions While most people had a positive experience of having a complex polyp removed, support initiatives, such as counselling or signposting to coping strategies, may be helpful to reduce any potential negative effects of procedures on quality of life. Patient or Public Contribution Four patient and public involvement partners provided feedback on participant materials.

the polyps identified are 'complex polyps' 2 or 'significant polyps'. 3 They are complex because of characteristics (e.g., size, morphology, location, access) that make them difficult and more risky to remove. 4,5 Indeed, until developments of advanced endoscopic techniques, surgical removal was the only option. 4 Endoscopic removal of complex polyps is associated with less risk and is cost-effective, but is dependent on endoscopic skill. [6][7][8][9][10] There is a dearth of evidence on patient experience and quality of life in relation to complex removal of polyps. A comparison of endoscopic polyp removal and sigmoid resection for colon cancer showed more bowel dysfunction symptoms following sigmoid resection. 11 While there was no difference in overall quality of life between the two procedure groups, those who underwent a sigmoid resection had greater impairment in quality of life due to bowel dysfunction. 11 Bowel dysfunction due to surgery has been previously suggested to have a long-term negative impact on patients' quality of life. 12 Miller and Sedgewick 13 compared patient experiences of polyp cancers within the English Bowel Cancer Screening Programme by procedure type, endoscopy or surgery. A difference in quality-of-life issues around self-care was found (but the direction of effect was not reported). Interviews with a small subsample found that both groups of patients experienced fear and anxiety, however, those who underwent surgery received more clinical support than those who underwent an endoscopy procedure. 13 This is expected because NHS support processes for patients after endoscopic procedures differ from the support provided to surgically managed patients; surgical postoperative patients have regular follow-up and support when compared to endoscopic patients, who only have one point of contact.
The Bowel Screening Wales complex polyp removal service was established in 2011 as a pilot and integrated into the service in 2017.
It was introduced to address variation in rates of surgery 2 and high incomplete resection rates as well as to make the screening service more equitable across Wales. The complex polyp removal service is comprised of a Network Multidisciplinary Team (NMDT), National Referral Centre (NRC) and central co-ordination, and has defined specific referral criteria. The patient's local team is encouraged to attend the virtual NMDT meeting, where case images and videos are reviewed and discussed and a decision on management is made.
Where appropriate, cases can be referred on to the NRC for expert treatment. In contrast to local centres, the NRC offers a number of different advanced endoscopic procedures. A small (n = 24) evaluation of the NMDT and NRC pilot in Wales showed that participants wanted to have the decision to be referred to the NMDT discussed with them and most had treatment options discussed with them after the NMDT. The majority of participants described their experience of the NRC as good or excellent. 14 The premise of the complex polyp removal service is that having an endoscopic procedure will be more cost-effective and will lead to better outcomes. Examination of the quantitative outcomes and health economics of bowel screening participants with complex polyps detected at screening colonoscopy has been completed (to be reported in a separate manuscript). While those outcomes are clinical (e.g., complications, hospital stays), it is also important to assess patient experience and quality of life. As clinical and patient experience outcomes are likely linked, we expected that those who had an endoscopic procedure may have a better experience of the complex polyp removal service than those who had a surgical procedure. However, much of the literature around quality of life and different procedures suggests limited difference. The aim of this study was, therefore, to explore patient experience of complex polyp removal and how it might influence quality of life.

| Sample
All patients who went through the complex polyp removal service and had a complex polyp removed within a 12-month period (March 2019-2020) were sent a study invitation pack (cover letter, participant information sheet, questionnaire and consent forms) in September 2020. A reminder letter was sent approximately 4 weeks after the initial invitation if no reply had been received. At the time participants would have had a complex polyp removed (March 2019-2020), bowel screening was available to people in Wales aged between 60 and 74 years.

| Procedure
Participants were able to choose whether to take part in an interview and/or complete a questionnaire for the study. The questionnaire data were collected primarily for a health economics analysis (to be reported elsewhere), but are used within the present study to describe the sample. The questionnaire consisted of the EQ-5D-5L 15,16 ; https://euroqol.org/eq-5d-instruments/eq-5d-5l-about/ along with questions about demographic background (age, education, employment and living arrangements). The EQ-5D-5L is based on two components: the utility index and a vertical visual analogue scale (VAS); the latter is reported here. The VAS asks 'how good or bad your health is today', and has a range of 0 (worst health you can imagine) to 100 (best health you can imagine).
Upon receiving a completed consent form for a telephone interview, a researcher from the study team contacted the participant to arrange an interview and answer any questions. At the interview appointment, following consent, participants were asked to describe their experience of going for a complex polyp procedure narratively (from being referred following positive result, to outcomes in following weeks). Interviews were semi-structured, and topics included procedure details, experience of procedure (including practical issues like travel arrangement, friends/family support), difficulties arising from the procedure, current quality of life and perceived influence of procedure (including outcomes) on quality of life (see the Supporting Information File for topic guide). Prompts around quality of life included domains from the EQ-5D-5L questionnaire (mobility, self-care, usual activities, pain/discomfort and anxiety/depression; https://euroqol.org/eq-5d-instruments/eq-5d-5l-about/. 15,16 Interviews were audio-recorded and transcribed verbatim. The interviewers were experienced and had a wider team who provided debriefing support where appropriate. Data about participants' relevant healthcare (e.g., type and location of the procedure) were collected (with participant consent) from Bowel Screening Wales.

| Analysis
Transcripts were analysed thematically, 17 and NVivo 12 18 was used to manage the data. Analysis of the interview transcripts followed an iterative process to capture participants' reality and draw meaning from their experiences in the context in which they occurred. 17 After familiarization with the data, a coding framework was generated through discussion, during which 20% of the transcripts were doublecoded. Codes most pertinent to the research questions were then analysed to refine the codes, which resulted in identifying themes.
Other codes were checked for relevant information where appropriate. Similarities and differences were explored within the data, both by looking through the codes and using visual maps.

| Sample characteristics
Of the 71 people invited to participate, 21 completed an interview between October and December 2020 (response rate 30%). One participant chose not to take part in the questionnaire study, so we do not have demographic data for them. Participants were aged between 61 and 74 years (mean = 67.7, SD = 3.9), and the majority of participants were male (76%; Table 1). Most of the participants were retired (71%), and the majority owned their own home (81%; Table 1).
The majority of participants (86%) had undergone an endoscopic procedure to remove their polyp. Two participants had surgery to remove their polyp, and one participant went through an endoscopic procedure, followed by surgery for complete removal of their polyp (Table 1). Most participants rated their current quality of life as quite good, with a mean VAS score of 78.9 (SD = 16.0).

| Themes
Participants' narratives describe their experiences through different stages of the procedure (before, during and after) and how they adapted Three dots within quotes indicate that part of the quote has been removed. Text in brackets (not italicized) is used to add clarity to the quotes and a semicolon within the same quote is used to identify another relevant quote from elsewhere in the transcript reflecting the same theme. Where applicable, participant quotes are represented in Table 2, and a reference is provided in the text using parentheses.

| Preparing for the complex polyp removal
3.2.1.1 | Worry about undergoing the procedure and its outcomes All participants had some kind of concern either related to the procedure or its outcome. Part of individuals' experiences of going for SEMEDO ET AL.

| Travel
Whilst some participants had the opportunity to express their preference about which hospital to have the procedure, others did not. Some commented on what may have contributed to decisions about where they had treatment such as specialized support, availability of the hospital setting/healthcare team or timing.
In most cases, the hospital was within easy reach and travel was not an issue (C). Some participants had to travel further to the hospital, which was less practical. Therefore, some booked accommodation or stayed in hospital the night before the procedure.  Communication and care …their general support, the informed, empathetic support that I've had from the specialist nursing team has been really remarkable…. But when you're at home and you get the call and it is not what you're expecting and you haven't got the chance to put that into context then those broad statements can be, without counselling of any sort …the whole business of breaking news and breaking bad news which is something which is well known and doing that over the phone is always going to be difficult and slightly unsatisfactory; …it's been a rocky road in a way but on the whole the support's been good, to digest that breaking news… is the one thing I feel could be improved.

| Additional hospital stay
Individuals who experienced more difficulties following the procedure (e.g., severe pain or high temperature) stayed in hospital briefly to ensure that they were well before returning home (E).
One extremely serious case required emergency surgery and a lengthier hospital stay of a month.

| Acceptance
For some participants, there was a sense of accepting that the procedure had to be done and acknowledging some of the complications associated with the procedure.
…It wasn't a good experience, but it was only because physically that's the territory with that sort of surgery… [P39-End-Surg-NRC]

| Problems experienced following complex polyp removal
The experience of problems following the procedure varied between individuals in terms of the type of procedure (e.g., endoscopy, surgery or both), significance and time to resolve. A few individuals, including one of those who had undergone surgery, mentioned not experiencing any problems following their procedure.
…To be honest I felt I was fit enough to go back to work the same day because it was done in the morning and I said I could go back to work this afternoon, but they advised me to perhaps take the afternoon off and not go back, just in case, I followed that but there were no complications at all. [P32-End-LAC]

| Pain and bleeding
Some people reported having minor bleeding and pain following the procedure that did not last long.
…I had a little bit of blood… I would say for the first like 2 days… but then I was told, if it persisted, I was to get back in touch with them, but… it stopped after Others experienced severe pain following the procedure. Of these, for one surgery participant, his pain was restricting and longer lasting and had to be managed with daily medication (F).

| Uncomfortable sensations and changes in bowel habits
Participants talked about a lingering pressure sensation, making them feel an unpleasant urge to go to the toilet. Of these, a few took medicines to be able to go to the toilet.

| Communication and care
Most people were very satisfied with the care that they received both during the complex polyp removal and associated procedures.
They emphasized the quality of support and advice received as well as effective communication with the healthcare team. reported. It is noteworthy that one individual was apprehensive of the procedure because of a comment made by the nurse at the hospital. However, the experience of the procedure and the care received during it meant that this concern was unfounded.
One participant, who had undergone surgery for a malignant polyp, praised the support received during his care, but thought that the breaking of bad news could have been handled in a more sensitive way (H).

| Support network
Most participants were very grateful to be supported by their families When asked about support from friends/family, a couple of participants reported not receiving specific support, but commented that support was available if they needed it.

| Reassurance
Reassurance was a significant aspect linked to the procedure in various ways.

| Reassurance about polyp being removed and negative test results
Participants reported being reassured that their polyp was removed, that test results were clear and that they were given a clean bill of health; concerns that they may have had before the procedure were allayed.
…and I would say that the reassurance I got from knowing that, that they have found something and that something that they'd found was not cancerous … I don't know, it was just really reassuring… [P14-

| Monitoring and further investigations
They also talked about 'being in the system', knowing that all was fine and that they were being monitored after undergoing endoscopy (I).  The findings of the present study are consistent with previous research where quality of life seemed to be mainly linked to complications following the procedure rather than the actual procedure. 11 Positive feelings reported following successful surgical procedures (e.g., elation) have been previously documented. 19 The present study supports findings from a recent international study investigating patients' colonoscopy experiences that also reported participants worrying about the procedure and its outcome,