216 Chapter 10 Table 3. Illustrative quotes on important elements of AL care (theme 4) Quotes • ’I went into the surgery knowing what the outcomes were and so my risk assessment and the honesty of the team was correct. It’s important to let participants know what possible side effects are there. I don’t feel like I didn’t know any of the possible side effects.’ – P5 • ‘What’s really important is the awareness of potential symptoms that can occur when developing a leak like preoperative, that is important somebody knows. (…) It’s not necessarily the gravity of a leak they should talk about, but the symptoms involved with it so a participant knows where to look at’. – P9 • ‘I know that not everybody has the same sort of communication level and care that I’ve had. So that is an important thing for me; be honest, transparent and just tell and inform the participants.’- P3 • ’Sometimes it’s overwhelming. If someone doesn’t have a relative or somebody that’s advocating for them, that it could be very confusing. (...) The hottest spot is that when you’re really sick, and they come in the morning, the surgical team starts talking to you and they start explaining things to you while you’re too sick. That part of it is kind of tough to keep track of where you are day-to-day. I was lucky to have my wife came in every day for 30 days and I was lucky to have her to kind of get the right information and make the right decisions as we went along.’ – P7 • ‘For participants it’s way easier to understand and follow everything if there is the same person in front of them instead of completely different people saying other things, and to make sure to talk to family as well if possible.’ - P7 • ‘I liked the fact that I was included in decision making, treatment options and available evidence.’ – P4 DISCUSSION This qualitative study highlighted perspectives of patients who developed AL following a colorectal resection, providing an in-depth understanding of the experiences they lived, from the initial diagnosis to long-term recovery. Four main themes were identified: physical impact, emotional impact, coping mechanisms, and important elements of AL care. Participants’ experiences with the development of AL varied based on the phase in the AL care continuum, with initial treatment and early recovery described as the most impactful. In this study, the effect of AL on patients’ physical status was evident at every stage of the journey. A prominent impact of AL that emerged was pain, whereby participants experienced significant procedure-related pain such as percutaneous drainage and reported difficulties managing their pain medication in the early phases. It has been described that transgluteal drainage can be particularly painful, necessitating appropriate analgesia to ensure patient tolerance 24, 25. Although participants stated that the physical impact of AL was less prominent in the long-term phase, they reported chronic sequelae, including abdominal wound complications, stoma herniation, fistula, and stricture formation. Additionally, patients reported functional problems, such as incontinence and LARS. These issues, build on literature, affirm close follow-up, and extended care in participants with AL, well beyond the early postoperative phase 26. The negative emotional impact of AL observed in
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