The patient perspective on colorectal anastomotic leaks: A qualitative study

Abstract

Aim

Anastomotic leakage is a well‐known complication following colorectal surgery, however, there is limited knowledge about patients' experiences with leaks across the care pathway, from initial diagnosis and treatment to long‐term recovery. To explore patients' experiences of anastomotic leakage following colorectal resection and identify patient‐reported priorities relevant to standardized reporting.

Methods

Qualitative descriptive study reported using the COnsolidated criteria for REporting Qualitative research. Online semi‐structured interviews were conducted with patients from five countries (Australia, Canada, Netherlands, United Kingdom, and United States). Ten participants (six males, median age 53 [range 39–65 years]) who experienced an anastomotic leak following a colorectal resection. Themes and subthemes emerging from thematic analysis until saturation were reached.

Results

Four main themes were identified: (1) physical impact, (2) emotional impact, (3) coping mechanisms, and (4) anastomotic leak care. Within these themes, participants detailed their lived experience during the different phases of the care pathway: diagnosis, treatment, early and late recovery. Additionally, participants indicated the elements of anastomotic leak care that they deemed most important, including preoperative education, communication, support from medical staff and peers, sharing of information, aftercare, shared decision‐making, and case management.

Conclusions

Patients having experienced a colorectal anastomotic leak reported a physical and emotional impact, applied different coping strategies, and emphasized the importance of clear communication, comprehensive care, and sustained attention beyond the early postoperative and treatment phase.

What does this paper add to the literature?

This study provides the first in‐depth qualitative exploration of patients' lived experiences with colorectal anastomotic leakage. It identifies under‐recognized physical and emotional burdens, highlights patient‐prioritized elements of care, and directly informs enhancements to the CoReAL reporting framework, underscoring the future development of an anastomotic leak‐specific patient‐reported outcome measure.

INTRODUCTION

Anastomotic leakage (AL) is one of the most dreaded complications following colorectal resection. The severity of AL varies based on its management, ranging from small defects, which may be managed conservatively with antibiotics and drainage of potential abscesses, to major dehiscence leading to peritonitis and sepsis, requiring reoperation, intensive care unit (ICU) admission, prolonged hospitalization, and even death [1, 2]. Moreover, AL often leads to delays in adjuvant therapy and stoma reversal, which negatively impacts oncological, functional, and quality of life (QoL) outcomes [3, 4, 5, 6].

Despite the extensive evidence on the incidence, aetiology, risk factors, treatment algorithms, and outcomes of colorectal AL, patients' experiences with this complication have not been fully explored in qualitative studies. This approach is essential for capturing the complexities of patients' perspectives, which quantitative methods cannot fully address [7]. Understanding patients' perspectives and experiences throughout this complication will provide insight into optimizing AL care. This includes managing expectations, communicating the diagnosis, deciding on a treatment plan, ensuring patients understand the anticipated outcomes, and providing multidisciplinary support for patients and their families throughout the entire care pathway [3, 8].

The aim of this qualitative study was to explore patients' experiences and perspectives with the diagnosis, treatment, and recovery from a colorectal AL. This preliminary study was conducted with patient partners from the ‘Consensus on Reporting and defining colorectal Anastomotic Leaks (CoReAL)’ project, an American Society of Colon and Rectal Surgeons (ASCRS) initiative to create a standardized framework for AL reporting after colorectal cancer surgery, and served as an informative step for the framework.

METHODS

Study design

This was a qualitative study using semi‐structured interviews conducted online from August–September 2023 [9]. This primarily inductive methodology resulted in independence from pre‐existing theoretical or philosophical commitments, aligning with our primary aim of describing patients' experiences [10, 11]. This study was reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist [12, 13].

Participants and recruitment

Members of the CoReAL collaborative identified eligible patient partners from surgical societies, individual institutions, or patient organizations. Adult patients (≥18 years old) who had experienced an AL following a colorectal resection for benign or malignant indications were eligible to be a CoReAL patient partner. To ensure that experiences were not too remote and to enhance the reliability of recall, we applied an upper limit of 10 years. We used a purposive sampling strategy, ensuring diversity in age, gender, and the severity of AL based on the International Study Group of Rectal Cancer (ISREC) definition and classification [14]. Severity of AL ranged from small abscesses treated with antibiotics to peritonitis requiring admission to the ICU. Non‐Dutch or non‐English speaking patients were excluded. Subsequently, the lead researcher (DH) shared the study details via email and obtained written informed consent. Purposive sampling continued until data saturation was reached, defined as the point at which no new information classified in (sub)themes emerged from the data [15].

Data collection

One‐on‐one semi‐structured interviews were conducted online to ensure the capture of in‐depth individual perspectives on specific topics, while also allowing participants the freedom to express any additional information they wished to share. The interview guide (Supplementary S1) was developed by two authors (DH and MK), with input from experts in colorectal surgery, qualitative research, and patient‐centred research. The guide included three core content areas: diagnosis, treatment, and impact. Participants' demographic characteristics (e.g., age, gender) and clinical data (e.g., type of surgery, AL treatments) were obtained during the interview. Prior to the interviews, patients were asked to review their medical records if they were uncertain about details of their primary surgery, diagnosis, timeline, treatments received for AL, etc. This was done to ensure accurate and complete information regarding patient characteristics. All interviews lasted approximately 1 h and was conducted by the lead investigator (DH) on an institutional version of Zoom. DH is a female physician who was completing a PhD at the time of the interviews and had undergone formal training in qualitative interviewing with assistance from an experienced qualitative researcher (MK). She had no prior clinical relationship with any of the participants. Verbal informed consent was obtained before commencing each interview. While the interview guide was not pilot tested, it was iteratively refined after three interviews.

Data analysis

The interviews were audio recorded, transcribed verbatim, and de‐identified before analysis. Two researchers (DH and MBos) extracted and analysed the data manually using Braun & Clarke [16] thematic analysis approach [16, 17]. Analysis was data‐driven, with no pre‐existing coding scheme or theoretical framework applied. The researchers read the first five transcripts and independently coded them by identifying and marking relevant sections within the text and subsequently allocating a code to each section using qualitative analysis software (ATLAS.ti, Berlin, Germany) [18]. Emotions were described using an emotion/feeling wheel [19, 20]. The software provided visual representations of the assigned codes, which helped the research track the frequency and distribution of codes across transcripts. All codes were compared, and a coding tree (second cycle coding) was created to inform the analysis of the remaining transcripts (Supplementary S2), which was discussed with the larger team. Any discrepancies in coding were resolved by consensus or consulting the senior researcher (MK). Throughout the analysis process, new codes were iteratively added to the coding tree as appropriate. All coded segments were analysed, and similar concepts were grouped into themes. Saturation was assessed on an ongoing basis using a saturation grid and considered to have been reached when two consecutive interviews produced no (sub)themes [21]. The research team comprised members with diverse perspectives to limit the role of preconceptions and pre‐study beliefs (Supplementary S3) [22].

RESULTS

Study participants

Ten participants who underwent colorectal resections for benign or malignant conditions were included in the study (Table 1). The participants were from the Netherlands (n = 3), Canada (n = 1), Australia (n = 1), the United States (n = 3), and the United Kingdom (n = 2). Six were male, with a median age of 53 (range 39–65) years. The wife of one participant (P6) joined the interview. Analysis of the interviews showed that no new codes emerged by the ninth interview. However, one additional interview was analysed to ensure thematic saturation. AL occurred from 3 days to 1 month after the index operation. Eight participants underwent percutaneous drainage and seven underwent a reoperation, including six with a new ostomy. The median time since the AL diagnosis was 2 years (range 4–88 months). Interviews lasted between 30 and 45 min.

TABLE 1.

Participant characteristics.

Participant, gender, age (years)	Surgical procedure	POD of AL diagnosis	Time since AL diagnosis (months)	Treatment of AL	Outcomes (at the time of the interview)
P1, F, 45	Ileostomy closure after open procedure (unclear which one)	3 days	24	Reoperation with stoma creation and percutaneous drainage	Not yet medically fit for stoma reversal
P2, F, 64	Laparoscopic sigmoid resection without diverting stoma for metastatic colon cancer	9 days	40	Reoperation with stoma creation, and percutaneous drainage	Permanent stoma, wound complications, and parastomal hernia
P3, F, 39	Ileostomy closure after open subtotal colectomy with diverting ileostomy	±1 week	88	IV antibiotics	Recto‐vaginal fistula which required another surgery and new ileostomy
P4, M, 42	Colostomy closure after laparoscopic sigmoid resection	3 days	36	Reoperation (without stoma creation), and percutaneous drainage	NA
P5, M, 54	LAR with ileostomy	±2 weeks	36	Percutaneous drainage	Stoma reversal done, LARS
P6, M, 65	Robot LAR without diverting stoma	6 days	19	Reoperation with stoma creation, and percutaneous drainage	Stoma reversal done, incisional hernia at stoma closure site
P7, M, 63	Laparoscopic colon resection (no other details provided) a	7 days	6	Laparoscopic reoperation with stoma creation, and percutaneous drainage	Stoma reversal planned
P8, M, 51	Robot assisted LAR without diverting stoma	8 days	24	First antibiotics and VAC; after 5 weeks reoperation with ileostomy	Stoma reversal and incisional hernia repair done, colonic stricture
P9, M, 51	Sigmoid resection without diverting stoma a	8 days	4	Reoperation with stoma creation, and percutaneous drainage	Stoma reversal done
P10, F, 55	Ultra LAR without diverting stoma	1 month	33	Percutaneous drainage	LARS

Abbreviations: F, female; LAR, low anterior resection; LARS, low anterior resection syndrome; M, male; POD, postoperative day; VAC, vacuum‐assisted closure.

^a Benign resection, no malignancy.

Themes and subthemes

Four themes were identified in the interviews (Figure 1): (1) physical impact, (2) emotional impact, (3) coping mechanisms, and (4) important elements of AL care. These were relevant to participants throughout the AL care pathway (from the time of diagnosis to long‐term recovery). Illustrative quotes within each theme are presented in Table 2.

FIGURE 1.

Schematic overview of themes, subthemes, and timeline.

TABLE 2.

Illustrative quotes per theme and timeframe.

Theme	Time	Quotes
Physical impact	Diagnosis	‘I felt sort of bubbly, popping feeling, something I've never felt before, so I knew something was wrong’ – P3 ‘You know, the incontinence and the diarrhoea were just out of control and I just felt like I was getting sicker and sicker’ – P10
	Treatment	‘I had 5 drains at one point and that was constant going down to radiology and having them drained. Honestly, that was the most difficult part of everything. It wasn't supposed to be painful, but it was. (…) Like at times they'd say, well, we need to go back in, either we need to relocate it, or we need to drain it again, I was already completely panicking. So that was a very difficult part of the illness, very difficult. It was so painful’ – P7 ‘Oh, the drain, it was really painful. I could hardly walk with that. The pain was horrendous’ – P1 ‘The drain, it was like a dog walking behind me, so annoying. (…) The impact of waking up with a stoma did not affect me that much, but the pain of the drainage did. They say it does not hurt. They said it's just a small puncture, but they should call it ram or crash it in’ – P2 ‘I did find having a drain extreme. Just going to the toilet and anytime I had to like move (…) irritation on that bag area was very painful. It gave me anxiety. And I just kept wanting it to be gone. You know, it was so painful. It just seemed such a long time’ – P10 ‘The internal VAC did so much pain. It's stitched to your rectum and the outside of your buttocks. The sound was annoying; the alarm went off all the time, so my wife put a thick blanket over it and multiple pillows, so it wouldn't wake us up. It was terrible’ – P8
	Recovery phase	‘I hated my colostomy, but got used to it very quickly in, in some respects, but it still disturbed my sleep. It leaked occasionally and that was always in the middle of the night or somewhere else. I just did not like having this. (…) I did not want to think about the fact it could happen’ – P5
	Longer term	‘I'd rather live my life with a permanent stoma, then the thought of having to go through the fistula again’ – P3 ‘I ended up having a hernia greater my right side was greater than 4 inches. My hernia stuck out over 4 inches, so it was a huge complication and it became more and more and impacted my mobility’ – P8
Emotional impact	Diagnosis	‘Having to go back into hospital when you've just come out is always negative, isn't it?’ – P3 ‘I just wanted the best chances of not having to have another surgery’ – P5 ‘I was scared to death to get a stoma. I was like, anastomotic leaks who cares, it's just going to heal! That was my mindset. (…) But I was at some point I did become fearful of pain because it was so painful.(…) There was a time I was ready to, I was ready to go to heaven’ – P8 ‘I was just thinking: okay I'm maybe going to wake up with a stoma, as long as I survive. I just want to survive’ – P4
	Treatment	‘I want the rejoin of my stoma. I think it's just to get a bit of body security back, a bit of normality, so I don't have to worry about leaks. It's a bit scary, but I know I'm going to be alright’ – P1 ‘I mean my mother had ovarian cancer in the 90s, and it metastasized into her bowel. And then she had a permanent colostomy and it really made her miserable. And I think that experience me seeing her go through, that affected me negatively in terms of definitely not wanting a permanent colostomy, so I did not want to have a permanent colostomy’ – P5 ‘The stoma just has to be managed. I do not have problems. But still I want to feel normal again’ – P7 ‘The stoma did not bother me in daily activities, it did not affect me that but. But still… It's just nice to not have it; if it can be removed then remove it’ – P6 ‘I didn't really like the stoma, it was depressing. Uh, and it limited my ability to go outside, do things. At least psychologically. I didn't want to be walking around with a bulge in my T‐shirt or whatever. It's just annoying: poop in a bag. There's some, you know, body illusions of a body autonomy that are involved there maybe in terms of what we can control and what we can't’ – P9
	Recovery phase	‘Yes it impacted my quality of life cause I couldn't work’ – P1 ‘Learning all this medical care sucked. These were not really the things that I wanted to learn about or things that I wanted to do. Again, due to my wife's support we made it work. She was all over the Internet looking for information…’ – P9
	Longer term	‘I'm a very stoic person. The complication did give me compassion for people that are dealing with chronic diseases. It gave me a whole different viewpoint and I'm actually glad about that’ – P8 ‘I don't know that it's from the leak itself, but I guess the experience contributed to my anxiety and my anti‐anxiety medication now. My anxiety going to any doctor or specialist is really quite high because I'm not a very forceful person by nature, and so advocating for myself when I was so ill was very hard’ – P10
Coping strategies		‘It's just staying positive and figuring out what are the best treatment options to stop the leak and how to deal with it. You know, I mean, in hindsight’ – P8 ‘I was so focused that the tumour was gone and that part of the operation was successful, that I kept on being so positive, maybe too much, despite the fact that I developed a leak’ – P6 ‘Obviously it can turn badly so there was a small part of me that perhaps was thinking that this could be pretty dangerous. But then once I was in the hospital, I felt reassured. I was in the right place with the right people around me. Honesty and transparency of the medical team are so important, and this made me feel safe’ – P3 ‘I have always felt massively well looked after by my medical team and I was fully informed at all times about what they thought it could be. Therefore, I felt fine, this was my most positive experience’ – P4 ‘Luckily, my wife was nearby and taking care of me. She helped out, thankfully. (…) I prayed and read my Bible and all that it was at that point of my thoughts’ – P9

Physical impact

Acute physical symptoms and pain during treatment

Participants reported a wide range of physical symptoms at initial presentation. Some described feeling ‘lethargic, really tired’ (P7) or ‘weak’ (P1); others endorsed experiencing ‘pelvic’ (P5) or ‘stabbing abdominal pain’ (P2). Some participants had a ‘fever’ (P10), experienced ‘loss of appetite’ (P6), or had a ‘bloating feeling’ (P4), while others noticed their recovery was not evolving as planned based on a change in their bowel habits or decreased mobility due to pain.

Participants also reported experiencing pain during treatment of ALs. During the treatment phase, percutaneous (transgluteal) drainage was reported as a painful experience, leading to limitations in mobility and daily activities. Additionally, participants faced challenges with narcotic use, both in achieving adequate pain relief and in managing tapering of medications afterwards. One participant (P8) reported a negative experience with transrectal vacuum‐assisted drainage of their AL due to pain, which resulted in difficulty sleeping.

Long‐term physical challenges and consequences

Participants reported challenges with physical recovery. Physical rehabilitation proved challenging as participants struggled with weight loss and a lack of energy, finding it difficult to resume exercise post‐illness. While some physical symptoms persisted beyond AL treatment, participants generally expressed having learned to live with and manage the physical symptoms. Ongoing and more long‐lasting physical issues included ‘abdominal wound problems’ (P2), ‘parastomal or incisional herniation’ (P2/6), ‘fistula’ (P3), and ‘stricture’ (P8), requiring additional interventions. Participants who did not have a stoma created at their index surgery and those who underwent stoma reversal described experiencing defecatory issues including incontinence, urgency, and incomplete bowel evacuation. These participants were diagnosed with low anterior resection syndrome (LARS), for which some required educational, medical, or operative management.

Emotional impact

Emotional responses to diagnosis and early recovery

Participants felt fearful, anxious, scared, vulnerable, and disappointed when they were informed that they had developed an AL, with some expressing a sense of determination to overcome the complication. The voiced reasons for these emotions included concerns about having to return to the hospital shortly after being discharged home and experiencing pain. Other participants were concerned about the possibility of requiring a permanent stoma or another surgery, and some expressed concerns about the risk of dying.

Participants reported feeling anxious about the potential for escalating or new pain. Some reported fear associated with going to the bathroom due to diarrhoea, obstipation, or pain during defecation. Several participants who underwent cancer resections expressed greater fear of cancer recurrence than of the consequences of AL. Lastly, some participants expressed a renewed sense of determination to survive and overcome the AL.

Stoma‐related anxiety

Participants who required reoperation for stoma creation described feeling insecure about their body image. Many expressed concerns about their stoma bag leaking, especially when away from their homes. While some participants expressed minimal concern about having a temporary stoma to solve AL, most feared a permanent one. For some participants, this was informed by prior negative functional and emotional experiences reported by family members who had a stoma (P5). Despite having learned how to manage their stomas, many participants opted for stoma reversal, driven by a desire to regain a sense of body normalcy. The fear of complications during reversal surgery was generally low, with participants expressing confidence in their surgical team, despite the previous AL complication.

Long‐term adjustment and quality of life

Work‐related issues due to the AL diagnosis were also described, primarily delayed return to work. Learning how to manage drains or a stoma added to the physical difficulties. It was clear that AL initially impacted patients' QoL, but the longer term impact was generally minor. One participant noted increased anxiety about returning to the hospital in general, which she attributed to her extensive AL treatment (P10). While participants experienced both emotional and physical limitations in the initial recovery period, most participants accepted the situation and adapted.

Coping strategies

Adapting to a ‘new normal’

Participants described how they navigated the physical and emotional challenges associated with the AL pathway. Many adopted an optimistic outlook, trying to stay positive throughout the diagnosis and treatment despite the pain (P8). Participants emphasized the importance of accepting their ‘new normal’, putting their disease into perspective, and moving on with their lives. While some found comfort in having undergone curative resection despite the AL, one participant with metastatic disease (P2) noted that fixing the leak did not aid recovery as the cancer persisted.

The role of support systems

Participants emphasized the crucial role of a support system including surgeons, nurses, stoma specialists, and other related healthcare professionals and appreciated receiving information about their ongoing treatment. Support from family, friends, and patient support groups helped with coping. Some participants also found relief in their spiritual beliefs.

Important elements of AL care

Participants were asked to reflect on their experience to identify important elements of AL care of which seven were identified (Figure 1 and illustrative quotes in Table 3): (1) Preoperative education: Participants felt that sharing detailed information about possible postoperative complications before surgery was essential. They recommended that healthcare professionals provide patients with more information regarding the symptoms that would raise suspicion for AL in the early postoperative period. They felt that this may help patients recognize the signs of AL earlier and seek medical attention sooner. (2) Compassionate and transparent communication: Honest, transparent, compassionate, and clear communication during the whole journey was highlighted as a very important factor. (3) Tailored information delivery: Some participants felt that the amount of information received and the way it was presented at the time of AL diagnosis was overwhelming. One participant endorsed that the most difficult time for them was during the initial phase in hospital as they felt very ill and were not sleeping well due to the environment (i.e., multiple visits from the medical team, equipment alarms). (4) Continuity of care through case management: The use of case managers throughout the recovery period to help patients navigate the care pathway was emphasized. (5) Support from medical staff: Medical staff support was highlighted as very critical during this time. (6) Postoperative support services: Participants stressed the importance of adequate nursing and social support. They recommended that patients receive postoperative information and resources for additional social and peer support. Also, the importance of timely referral to stoma and/or physical therapists for comprehensive aftercare was emphasized. (7) Shared decision‐making: Participants appreciated being involved in the decision‐making process regarding management options (shared decision‐making).

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 lived experiences 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 pathway, 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 their 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 [23, 24]. 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, which are well described in the literature, affirm the importance of early identification, close follow‐up, and extended care in participants with AL, well beyond the early postoperative phase [25]. The negative emotional impact of AL observed in our study corroborates findings from a cohort study (1197 patients), where patients with colorectal AL experienced a clinically significant reduction in QoL at 6 months relative to baseline, while long‐term QoL scores were similar to patients without an AL [3]. This emphasizes the necessity for increased support for patients during the initial phase of AL and up to 6 months post‐diagnosis. Additionally, our participants expressed concerns about adjusting to a stoma. Despite prior studies demonstrating good QoL scores in older patients living with a stoma [26], the stigma and disability of stomas are well documented [27]. The interviews highlighted the different ways participants coped with AL using their support network and developing resilience. Various studies indicated that interventions aimed at enhancing optimism, social support, and active coping strategies like acceptance and positive reappraisal could foster positive changes in the aftermath and enhance QoL [28, 29]. The identified coping mechanisms may explain why participants experienced minimal disruption in their daily lives in the longer term period. The key aspects of AL care identified by our participants emphasized the importance of social support, patient‐ and family‐centred care, including communication strategies and shared decision‐making, and approaches such as nurse‐led case management. These elements have all been shown to improve patient outcomes in general, particularly psychological well‐being [30, 31, 32, 33, 34, 35, 36]. We developed five clinically applicable recommendations, displayed in Table 4, to apply the findings of this study in improving perioperative care for colorectal patients at risk of an AL.

TABLE 4.

Recommendations for perioperative care.

Complete a preoperative risk assessment and provide clear and realistic information regarding AL (including associated signs and symptoms) Apply a patient‐ and family‐centred care approach (including clear communication, information provision, and shared decision‐making) Make timely referrals to supportive care (e.g., referrals to a stoma therapists, physiotherapists, wound care specialists, and social work) Emphasize the importance of streamlining information (not too many people involved in the treatment plan) Optimize pain management, particularly as it relates to the need for further interventions like percutaneous drain management

The findings of this study were used to inform the ASCRS' CoReAL project, which aims to create an evidence‐, patient‐ and expert‐informed standardized framework for reporting colorectal AL [37]. The CoReAL framework includes the reporting of AL‐related factors at different stages: preoperative, intraoperative, and postoperative short‐term (<90 days) and long‐term (>90 days).

The CoReAL reporting framework gathered all available evidence on anastomotic leaks and revealed that many patient‐reported element documented in our qualitative study, were either under‐represented or entirely absent in the existing literature. As a result, these aspects were also missing from the framework due to the lack of evidence. By incorporating the qualitative interviews with patients, we were able to capture these missing perspectives and reflect them in our proposed reporting framework. Based on the current work, we integrated specific patient‐identified reporting elements into the framework. In the preoperative phase, patients emphasized the importance of risk assessment and the need for clear information about the risk of AL. This is reflected in the CoReAL framework where all modifiable (obesity, smoking, albumin levels, and alcohol consumption) and non‐modifiable risk factors for AL (tumour characteristics and comorbidities) were compiled as preoperative reporting elements. We recommend assessing these factors preoperatively and providing a detailed individualized preoperative risk assessment for AL, including a comprehensive discussion with each patient to ensure they are fully informed. Lack of preparation for a potential stoma was another issue identified in our study. As a result, two stoma‐related reporting elements were included in the preoperative assessment: (1) whether potential need for a postoperative or permanent stoma was discussed, and (2) whether the patient received preoperative education about a possible stoma. To better capture the occurrence and impact of short‐ and long‐term sequelae of AL, we included the reporting of all complications related to AL (e.g., hernia, stricture, fistula, stoma complications) in the early and late phases of the framework, respectively. Finally, to address the impact of AL on function and QoL, we integrated the LARS score [38], Wexner Faecal Incontinence Score [39], and QoL measures in the early and long‐term phases of the framework. The framework includes follow‐up on all emotional and physical outcomes for at least 1 year. Adding these elements, based on the interviews, ensured that the patient's voice, often overlooked, is now included in the conversation around leak reported outcomes. Ultimately, our findings highlight the need for a dedicated patient‐reported outcome measure (PROM) specific to AL. Developing such a PROM would allow clinicians, researchers, and policymakers to better assess and address what truly matters to patients, making the framework more valuable and relevant across all stakeholder groups.

Strengths and limitations

We used a robust qualitative approach to gain insights into the physical and emotional burdens experienced by patients with an AL. While this study included a diverse group of participants, highlighting a range of perspectives, the number of participants included was small. However, unlike quantitative studies, qualitative studies do not aim for generalizability based on sample size but strive for plausibility based on thematic saturation. Triangulation was not employed in this study, which may limit the depth and credibility of the findings. Future research could incorporate triangulation to enhance the validity and comprehensiveness of the results. The researchers' comprehension and interpretation of the data could have influenced the results. To mitigate this, two trained researchers independently coded the data and (sub)themes were discussed with the larger research team. The possibility of socially desirable responses regarding treatment satisfaction or the omission of sensitive issues cannot be ruled out. Nevertheless, interviews were conducted without prior clinical associations with participants. We used purposive sampling, a well‐established qualitative approach designed to select information‐rich cases that are most relevant to our research focus. Specifically, within the CoReAL project, we targeted individuals with recognized expertise in AL, including surgeons, clinicians, and researchers, ensuring deep insights from seasoned professionals. Lastly, respondent validation (i.e., member checking) was not performed, but the rigorous application of thematic analysis ensured that interpretations remained closely aligned with participants' perspectives as expressed in the interviews.

Future perspectives

This initial exploration could guide future research involving a larger, more diverse patient population worldwide. Within future research and the use of the CoReAL framework, it may also be beneficial to compare patient perceptions according to the grade of AL [40]. The next step should be to employ maximum variation sampling to get a more diverse set of perspectives. Yet, this study may serve as a foundation for creating a universally accepted questionnaire for patient‐reported outcomes (PROs).

CONCLUSIONS

This study provides multidimensional and novel insights into the lived experiences of patients with AL. The findings highlight the physical and emotional impact of AL, as well as identified coping strategies, emphasizing clear communication, comprehensive care, and sustained attention beyond the early postoperative and treatment phase. These findings highlight the broad impact of AL and its treatment on patients' lives and the importance of increasing awareness among clinicians, urging them to consider patients' experiences and values when making AL treatment decisions. The findings could inform the development of PROMs to systematically assess AL‐related outcomes in future research and clinical practice.

AUTHOR CONTRIBUTIONS

Merel L. Kimman: Supervision; methodology. Matthijs H. Bosveld: Conceptualization; investigation; funding acquisition; writing – original draft; methodology; validation; formal analysis; data curation. Olivia Monton: Supervision; methodology; writing – original draft; writing – review and editing. Nicole D. Bouvy: Conceptualization; writing – review and editing; methodology; supervision. Marylise Boutros: Conceptualization; methodology; writing – review and editing; supervision. Patricia Sylla: Supervision; conceptualization; investigation; writing – review and editing; methodology; project administration. Julio F. Fiore Jr: Conceptualization; methodology; supervision. Nader Francis: Conceptualization; methodology; writing – review and editing; supervision. Abe Fingerhut: Conceptualization; writing – review and editing; supervision. Anke H. C. Gielen: Conceptualization; investigation; funding acquisition; writing – original draft. Danique J. I. Heuvelings: Conceptualization; investigation; writing – original draft; methodology; validation; visualization; writing – review and editing; formal analysis; data curation. Stephanie O. Breukink: Supervision; methodology; conceptualization.

FUNDING INFORMATION

The study was initiated by the CoReAL project, which is funded by the American Society of Colon and Rectal Surgeons (ASCRS) Research Foundation Anastomotic Leakage Grant.

CONFLICT OF INTEREST STATEMENT

Patricia Sylla received consulting fees from Ethicon, Stryker, Tissium, and Safeheal. Deborah S. Keller received consulting fees from Medtronic, Arthrex, and J & J. Jennifer Davids received consulting fees from Medtronic, SafeHeal, Tavanta, and Olympus. Elizabeth Wick received consulting fees from Takeda and J & J. Mehraneh Dorna Jafari received consulting fees from Medtronic. Steven Wexner received consulting fees from ARC/Corvus, Baxter, BD (Becton, Dickinson & Co), GI Supply, Glaxo Smith Kline, ICON Clinical Research, Intuitive Surgical, Leading Biosciences, Livsmed, Medtronic, Olympus, OstomyCure, Stryker, Takeda, and Virtual Ports, has a data safety monitoring board membership in JSR/WCG/ACI (Chair) and Polypid (Chair), and received royalties for inventor's income intellectual property sale or licence for Intuitive Surgical, Karl Storz Endoscopy America Inc., and Unique Surgical Innovations LLC. Nicole Bouvy is a member of the advisory board of Active Surgical and received an education grant from Medtronic. David Clark received an honorarium to attend an Olympus expert forum. Abe Fingerhut received consulting fees from Baxter. Justin Maykel received consulting fees from SafeHeal, Olympus, Takeda, and RedDress. Jeremie H. Lefevre received consulting fees from SafeHeal, Intuitive. Neil Hyman is on the scientific advisory board for COVIRA, which is a U Chicago company based on the work of John Alverdy‐I. The other authors have no conflicts of interest or financial ties to disclose.

ETHICS STATEMENT

The study was approved by the IRB of Icahn School of Medicine at Mount Sinai (STUDY‐24‐01313) and adhered to the principles outlined in the Helsinki Declaration, including the Helsinki criteria for research involving human subjects (World Medical Association, 2013). All participants volunteered and provided informed written consent prior to study enrolment, and verbal informed consent prior to each interview.

Supporting information

Appendix S1

APPENDIX A.

A.1. Contributors

CoReAL collaborative: Michel Adamina, Alberto Arezzo, Mahdi Al‐Taher, Tan Arulampalam, Saba Balvardi, Paul Barach, Himani Bhatt, Marta Botti, Stephanie O. Breukink, David A. Clark, Freek Daams, Jennifer S. Davids, Anse De Sadeleer, Abe Fingerhut, Zoe Garoufalia, Anke H.C. Gielen, Mukesh G. Harisinghani, Roel Hompes, Neil H. Hyman, Mehraneh D. Jafari, John T. Jenkins, Audrey C. H. M. Jongen, Deborah S. Keller, Samuel H. Lai, Jérémie H. Lefevre, Bibi Martens, Justin A. Maykel, Jeongyoon Moon, Nariaki Okomoto, Ian M. Paquette, Gianluca Pellino, Sherief F. Shawki, Benjamin D. Shogan, Chelliah Selvasekar, Simon Siu‐Man Ng, Jasper Stijns, Patricia Tejedor, William Tzu‐Liang Chen, Yu‐Ting T van Loon, Christiaan van der Leij, Steven D. Wexner, Elizabeth Wick, Marina Yiasemidou.

Heuvelings DJI, Gielen AHC, Bosveld MH, Kimman ML, Monton O, Fiore JF Jr, et al. The patient perspective on colorectal anastomotic leaks: A qualitative study. Colorectal Dis. 2026;28:e70471. 10.1111/codi.70471

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are all available in the manuscript of Supplementary materials. Additional information can be asked from the corresponding author upon reasonable request.