Holistic assessment of anterior resection syndrome

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Holistic assessment of anterior resection syndrome Abstract Anterior resection syndrome is a term used to describe altered bowel, often after anterior resection surgery. The syndrome affects at least 50% of those treated with sphincter-saving resection surgery for rectal cancer. It covers several bowel symptoms including frequency, urgency, incontinence, and fragmentation of stools, often experienced together to varying degrees. This article aims to highlight the importance of assessing bowel symptoms in patients recovering from rectal cancer surgery. A detailed assessment of a patient’s bowel symptoms with a review of how each is affecting them is recommended. Standardised bowel assessment tools are available to provide objectivity and allow a more reliable measurement of change over time. However, these may overlook what the symptoms really mean for an individual and the effect they have on a daily basis. The diagnostic and treatment experience can affect not only the patients’ physical health but also emotional and psychological wellbeing. It is thus recommended that symptom assessment is incorporated into a wider appraisal of holistic care needs.

© 2015 MA Healthcare Ltd

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nterior resection was first described over 60 years ago (Dixon, 1948) as an operation allowing patients with rectal cancer to avoid a permanent abdominal stoma. The technique involves resecting the rectum and performing an anastomosis—joining the two ends of bowel—thus restoring intestinal continuity and saving the anal sphincter (Brown et al, 2008). Anterior resection is now the mainstay of rectal cancer treatment, with 5500 patients per year having this surgery in England and Wales (National Bowel Cancer Audit Project (NBOCAP), 2012). There have been many advances in rectal cancer surgery over the last 20 years, two of which have increased the potential for altered bowel function postoperatively. First, coloanal anastomoses have become possible for patients with very low rectal cancers, thereby sparing the patient of a permanent abdominal stoma. Second, the careful dissection of tissue around the rectum (the mesorectum) is now considered the gold standard surgical approach to minimise Gastrointestinal Nursing

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risk of local cancer recurrence (Stewart and Dietz, 2007). Indeed, an anterior resection involving removal of all the mesorectum is often referred to as a total mesorectal excision (TME). As a result, temporary stoma formation rates have increased, and up to 80% of patients having an anterior resection will experience several weeks if not months when their bowel is defunctioned (not used). Once the anastomosis has healed, the stoma can be reversed and intestinal continuity restored (Camilleri-Brennan and Steele, 2001).

What is anterior resection syndrome? After stoma reversal, all individuals will experience an alteration from their ‘usual’ (preoperative) bowel function. Symptoms of frequency, urgency, fragmentation of stools, flatus incontinence, and evacuatory dysfunction are commonly experienced (Camilleri-Brennan and Steele, 2001). Since few patients will pass a semi-formed stool type in the weeks after stoma closure, continence can also be compromised (Engel et al, 2003). This has given rise to articulation of a

Claire Taylor Macmillan Lead Nurse in Colorectal Cancer Nursing, Elissa Bradshaw, Biofeedback Clinical Nurse Specialist, St Mark’s Hospital, London, England [email protected]

Key words Rectal cancer Nursing care Needs assessment Anterior resection syndrome Faecal incontinence This article has been subject to double-blind peer review

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Why assess for ARS? The rationale for formally assessing if an individual has developed ARS is that as many as two-thirds of patients recovering an anterior resection can experience this syndrome (Emmertsen and Laurberg, 2008; Bryant et al, 2012). Assessment is needed to identify the occurrence and nature of any symptoms, and monitor how they are changing over time once appropriate treatment has been instigated. While associated bowel symptoms generally begin to improve after the first 3 months, for some patients, the unpredictable bowel pattern continues for longer. Only by asking individuals direct questions can we establish the true nature of their symptoms after this surgery. Even if individual reports show no concerning bowel symptoms, it is worth asking these patients a few open questions (Box 1) to ensure that no ARS-like symptoms are being experienced. Patients are often reticent in volunteering information about their bowels (Ness et al, 2012). The reasons include: Embarrassment: Bowel function is still a taboo subject for many Acceptance: The price to pay for having cancer treatment Fear of seeming ungrateful Belief that time is the only healer. Many individuals with ARS describe their change in bowel habit as diarrhoea, when it may in fact

Box 1. Initial screening questions to assess for presence of anterior resection syndrome Do you have to rush to the toilet (urgency)? Are you going more frequently (frequency)? Do you always manage to make it to the toilet on time (possible faecal incontinence)?

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more accurately be a cluster of different bowel symptoms that can only be appreciated through further questioning. The assessment can establish the severity of each symptom experienced and affect that individual (Brennan et al, 2013). Only by gaining a comprehensive account of how their bowel function is affecting their quality of life can care be accurately planned.

Understanding the causes of ARS Assessment can help determine the exact cause of ARS, which may be multifactorial. We know that the process of maintaining continence is complex, requiring an effective rectal reservoir, intact sensory and motor nerve pathways, and responsive anal sphincter complex (Brown et al, 2008). Surgical removal of the rectum can cause alteration and poor coordination in these pathways (Campos-Labato et al, 2011). Trauma to the sphincter complex by surgical instrumentation damages the mechanisms of autoregulation and lowers the resting pressures needed to hold on to both stool and wind. Defunctioning the colon for several months causes additional impairment, as the villi in the colonic mucosa atrophy, temporarily reducing the colons absorptive capacity. An increased colonic transit time coupled with a more pronounced gastro-colic reflex results in loose, urgent bowel motions. The nature of the symptoms experienced is to some extent dependent on the surgical technique utilised; if all the rectum is removed and no ‘neo-rectum’ is created (in the form of a coloanal pouch), then the lack of a storage area for the stools makes bowel frequency and passage of small amounts of fragmented stools more probable in the first year after the surgery (Pachler and Wille-Jørgensen, 2012). Even if the rectum remains, its capacity and compliance are likely to be compromised, certainly in the first few months after surgery. In addition, radiotherapy treatment with and without the addition of chemotherapy significantly increases the risk of ARS (Pollock et al, 2006; Bregendahl et al, 2013).

Assessment process The assessment can be divided into three main components: Examining the nature and perceived discomfort of any bowel symptoms experienced Gastrointestinal Nursing vol 13 no 3 March 2015


syndrome—anterior resection syndrome (ARS)— covering a spectrum of disordered bowel function from minimal and temporary changes to severe symptoms that affect quality of life and may persist over several months. Its prevalence might be increasing owing to more extensive pelvic dissection, greater use of preoperative chemo/radiotherapy (compared with 20 years back), and the likelihood of several months of a defunctioned bowel following the primary resection (while a temporary stoma is in situ) (Hassan and Cima, 2007).

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Table 1. Questions used to assess continence and evacuation as part of an anterior resection syndrome bowel assessment Assess continence Urgency

 Yes

 No

 Yes

 No

Deferral time in minutes Urge incontinence

How often in 24 hours? Stool form of urgency leakage (Bristol stool chart) Passive leakage

How often in 24 hours?

Stool form of passive leakage (Bristol stool chart) Post-defaecation leakage?

 Yes

 No

Continent of flatus

 Yes

 No

Measures being used:

Assess evacuation Straining to evacuate

 Yes

 No

Feeling of incomplete evacuation

 Yes

 No

Repeat toileting? (over how long)


Measures being used:

Assessing the effectiveness of current management strategies employed Reviewing general coping ability. The first part of the assessment should start with a few broad screening questions to capture all bowel-related issues followed by a more detailed and systematic review regarding each bowel symptom being experienced. Symptoms are best recorded in the patient’s own words as a description of what is most troubling them. Establish the individual’s current bowel frequency and form, degree of continence for both flatus and stool, and ease and completeness of evacuation. Table 1 illustrates a section of the authors’ assessment sheet. The questions in Table 1 help specify the exact nature of all the symptoms being experienced, for example, the number of toileting episodes in any 24-hour period. The questions not only focus on the assessment, but as they are asked, the nurse will note how the patient builds trust, recognising the nurse’s knowledge and desire to understand his/her situation. Many patients also state that they feel relieved to be asked these questions as they realise their symptoms are not uncommon. The nurse should document if any patterns in the patient’s bowel function are emerging. For example, there might be a pattern of frequent toileting at a particular time of the day, or not uncommonly, there may be nocturnal defecation (bowels opening in the night), which for some, Gastrointestinal Nursing


may be triggered after eating a large meal in the evening. It is often not until this point that individuals start to notice if any daily patterns in bowel function are emerging. A few may report a very variable pattern of bowel function over time, with alternating periods of constipation and diarrhoea over the last few weeks. Indeed, one of the difficulties in defining ARS is that it is unique to every patient. Besides assessing the patient’s toileting behaviour, often these patients spend excessive amounts of time sitting on the toilet. This also gives you some insight into how much their bowel symptoms are interfering in their day-today lives. Asking about toileting time can often help to improve posture. It is necessary to know if the individual experienced any bowel function issues prior to their treatment. Many pre-existing conditions and medications that can affect bowel and sphincter function could exacerbate the effect of rectal cancer treatment. For example, you might discover that the patient was only just managing to maintain bowel continence prior to surgery owing to weakened pelvic floor muscles after childbirth. A variety of confounding factors are known to affect bowel function. These should be routinely recorded, including a history of: inflammatory bowel disease (IBD), irritable bowel syndrome (IBS), obstetric injury, or anal abuse (Emmanuel, 2004). Some studies have alluded 35

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Self-management strategies The next part of the assessment involves finding out what the patient has been doing to try to improve his/her bowel function. As a first selfcare strategy, patients often desperately try to identify dietary triggers in a way to manipulate their situation. Much variation is seen: some individuals may change their diet, which in extreme cases may involve restricting foods altogether, or often may keep a mental or even written record of what foods possibly exacerbate their symptoms. It may well be that one or two foods or fluids are exacerbating their symptoms, so it is important to assess the amount of fibre, caffeine, artificial sweetener, and other colonic stimulants such as spice being ingested. Also, the nurse should establish how successful any dietary changes have been on bowel function. If symptoms are acute, many individuals use avoidance behaviours, such as not going out of the hourse at certain times for fear of incontinence. Assessing the effectiveness of a patient’s selfmanagement of particular symptoms is integral to appreciating how well he/she is adapting in this situation. Identifying which self-management strategies being employed are effective, cannot only empower the patient but will hopefully also reinforce appropriate behaviours, strengthen resolve, and hopefully improve outcomes. This is very much in keeping with the supported selfmanagement ethos advocated by the National Cancer Survivorship Initiative (Department of Health et al, 2013). Bowel assessment as part of a holistic needs assessment The final part of this detailed bowel function assessment is a holistic needs assessment, which helps establish the effect these treatment consequences are having upon the patients’ lifestyle in the context of the patients’ overall 36

health needs and how well they are coping with them. By conducting a holistic assessment, there is implicit recognition that rectal cancer and its treatment have consequences that extend beyond possible bowel symptoms. Research has demonstrated that quality of life of this patient group is closely associated with the severity of ARS (Juul et al, 2014). The psychological component of ARS should not be underestimated and further assessments may be needed to develop a deeper understanding of the emotions associated with this condition (National Cancer Action Team (NCAT), 2007). These acute bowel symptoms can cause patients to experience a loss of control and much concern. In addition, there is often uncertainty in how best to cope with symptoms leaving many just ‘muddling through’ (Taylor and Bradshaw, 2013), rather than proactively managing them in a more constructive manner. This can lead to a perpetuating cycle of unpredictability and uncontrollability, which creates further anxiety (Norton and Chelvanayagam, 2004). The final rationale for use of holistic assessments is that there may be other treatment consequences to consider that are not bowel related, and by acknowledging them, the patient may be better able to decide their priorities for further action. Development of a care plan should be the natural outcome from this assessment, which is written together with the patient with a view for them to work on the activities agreed. Assessment should continue in order to monitor progress and respond to recommended treatments.

Alternatives to this assessment There are a few existing bowel assessment tools when assessing for ARS. To date, these tools have been used mainly in research settings, but all have application in the clinical area and offer a structured alternative to any locally-developed assessment tool. There is known benefit in using a standardised assessment measure when reviewing symptom change over time and also for evaluating treatment outcomes. The rationale for using a scoring system embedded within these tools is that symptom experiences are highly personal and subjective and may be difficult for observers to understand. The two multi-item bowel tools developed to evaluate bowel function after sphincterpreserving surgery include the Memorial Sloan Gastrointestinal Nursing vol 13 no 3 March 2015


to the effect of age on anorectal function, which may also be of relevance in this patient group (Engel et al, 2003; Brown et al, 2008; CamposLobato et al, 2011). Then, consider if any of the following specific risk factors for ARS apply: Preoperative radiotherapy Defunctioned with a temporary stoma for longer than 6 months Low rectal resection Previous pelvic surgery.

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Kettering Cancer Centre (MSKCC) Bowel Function instrument (Temple et al, 2005 [AQ1: Missing in Reference list. Please give details]) and the LARS tool (Emmertsen and Laurberg, 2012).


MSKCC Bowel Function instrument This instrument has been developed through a methodologically rigorous process in one centre to provide its face validity (Temple et al, 2005). The instrument has three subscales: frequency, dietary, and urgency/soilage. Four items that did not cluster with any of the three subscales were also included: controlling gas, differentiating gas from a bowel movement, if they have to empty bowels within 15 minutes of a previous bowel movement, and altering of any activities because of bowel function. This created an 18item instrument that patients are asked to score on a Likert scale from always to never, with the occurrence of each item over the last 4 weeks. The tool could be used during postoperative follow-up, although its testing was conducted on patients who were at least 6 months from ARS (with a median time from resection to completing the instrument of 28 months). A drawback of this tool is that it is quite time-consuming when calculating and interpreting the results. The LARS tool The LARS tool is a quick and valid scoring system that can be used in daily clinical practice to identify patients who may have ARS as well as monitor the effect of ARS treatment. The score has 5 items assessing incontinence, frequent bowel movements, bowel emptying difﬁculties, and urge. There are different scores for the relative severity of each and the individual maximal scores for each symptom are added to make the maximum LARS score. This total indicates whether the patient has ‘no LARS’, ‘minor LARS’, or ‘major LARS’ at that point in time. The form can be ﬁlled in by patients, for instance, it can be handed out in the waiting room prior to a postoperative review. The score can be calculated in under 1 minute to give a quick evaluation of the patient’s function. The disadvantage of this tool is that it does not assess how these symptoms are affecting the person or how the person is managing the symptoms. There are several other generic bowel assessment tools including the Wexner incontinence score (Cleveland Clinic) (Jorge and Gastrointestinal Nursing


Wexner, 1993), the Fecal Incontinence Severity Index (FISI) (Rockwood et al, 1999), or the Vaizey (St Mark’s Hospital) Fecal Incontinence Grading Score (Vaizey et al, 1999). These tools have been used in several research studies to assess incontinence from any cause but have not been tested in this patient group and may omit important bowel function questions, such as if repeated toileting is occurring and if there are episodes of incomplete evacuation.

When to assess Ideally, bowel function should be assessed before surgery, as it is important to know whether patients have had difficulties with control previously, whether they have sought medical help for their bowels, or if they have any preexisting relevant bowel condition or disease. Then, after the surgery, several time points are recommended: immediately postoperatively and then after hospital discharge at 2 weeks, 6 weeks, 12 weeks, and 1 year. It is preferable to have continuity in assessment with the same health professional repeating the questioning over time. If this is not possible, the responsibility should be shared across the clinical team. The assessments may well fit into the scheduled outpatient review and ideally should be an integral part of the consultation. If the timings are felt to be too prescriptive, then an assessment at 6 weeks post-surgery is advocated as the minimum, since this is a key milestone in their recovery. Over half the number of patients will experience very acute symptoms during the first 12 weeks, but with time, they should begin to settle down. We believe that by assessing for ARS early in the postoperative period, many concerns can be pre-empted, as by virtue of engaging in the assessment process, patients are often provided with a much clearer explanation of their symptoms and what else they might experience, and this in itself can improve their ability to cope with this syndrome. Many individuals might be able to cope for a few weeks, although after 6 weeks, they may begin to struggle; yet some patients will hold out until their subsequent outpatient contact before they ask for further support. Creating a system that allows any patient experiencing symptoms associated with ARS to continue to access help during the first postoperative year and receive additional assessments is recommended. 37

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Discussion Assessment is a critical step in providing highquality patient-centred care (Richardson et al, 2007). While the standardised bowel assessment tools mentioned are highly recommended, they cannot provide a multidimensional perspective of ARS to optimise its management. They do not elicit how ARS affects the patient’s quality of life. The value of a holistic assessment is to develop understanding of the extent to which these symptoms are interfering with the individual’s daily activities as well as their effect on the patient’s relationships and responsibilities. There is substantial evidence highlighting that inadequately assessed concerns result in poorer health and dissatisfaction with care (McDowell et al, 2010). However, we know that as well as patient reluctance to report bowel symptoms, professional and system barriers exist that can hinder effective assessment of symptoms. Hopefully, this article has provided a convincing argument on the benefits of conducting a bowel assessment after ARS. Perhaps the biggest reason why such assessments are not more widely utilised in the clinical setting is time. However, the LARS tool can be used in 5 minutes, and if clinical pressures prevent a holistic appreciation of these symptoms, then this part of the assessment could be condensed into the two following questions: To what extent are these symptoms troubling you? Do these symptoms prevent you from leading a full life? Obtaining answers to these questions will take no more than a few minutes, and are thus possible to ask even in the most pressured care environments. They provide a very quick impression if there are symptoms associated with ARS and how they are affecting the individual. Not undertaking a comprehensive assessment, or leaving it too late, could lead to individuals resigning themselves to their symptoms far 38

longer than is necessary. This seems unfortunate when simple effective solutions exist that can help the majority of those affected (Norton and Chelvanayagam, 2004). It is thus hoped that through early intervention, more chronic bowel dysfunction might be avoided. If we are successful in assessing and managing ARS symptoms sooner after cancer treatment, we should begin to see measures of health and wellbeing significantly improve against those living with a permanent stoma after rectal cancer resection during the first postoperative year (Hewitt et al, 2003; Arndt et al, 2006; Smith et al, 2009).

Conclusion Assessment for ARS is aimed at finding out as much as possible about an individual’s postoperative bowel function and how it is affecting his/her. Nurses need to be sensitive when asking patients about their bowel function as they can be reluctant to volunteer this information, possibly considering their symptoms to be inevitable, untreatable, and unimportant within the context of their cancer. Ideally, the assessment should be conducted over several points before surgery and then at regular intervals postoperatively. It should include questions aimed at establishing the main reported problems for the patient, including the form, frequency, and urgency of their bowel function; degree of control over the passage of stool and flatus; evacuation success; and patterns of defecation during the day and night. This article has suggested that the best practice following the initial assessment of symptoms associated with ARS is to determine what measures are being utilised by the patient to manage these symptoms. A holistic assessment will help to evaluate these symptoms in context, that is, how they are affecting that individual’s daily activities and responsibilities. Also, it can help us to appreciate that ARS is just one aspect of an individual’s recovery from cancer, and other factors may also be affecting their quality of life. This will guide treatment plans and empower patients to effectively manage the potential consequences of their cancer treatment. GN Declaration of interest [AQ2: Do you have any conflicts of interest to declare?]

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Within 1 year, the symptoms associated with ARS should generally settle into a more predictable and manageable pattern for most people, and if symptoms are ameliorated as soon as possible, there is less likelihood of longer-term ill-effect, whether this be chronicity of symptom or psychological effect (Coulter and Ellins, 2006).

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