Quality of Life in the Pouch Patient

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Introduction

Restorative proctocolectomy (RPC) with ileal pouch- anal anastomosis (IPAA) has become the surgical procedure of choice for patients with ulcerative colitis (UC) and familial adenomatous polyposis (FAP).

This high level of satisfaction has led to the referral of patients who would not have otherwise considered a procedure requiring permanent ileostomy [1, 2].

In the past, total proctocolectomy with terminal ileostomy was the most radical and oncologically safest procedure. Alternatively, when the rectum contained only a few polyps, total colectomy with ileorectal anastomosis was the preferred treatment [3].

The advantage of obviating the need for a stoma while preserving sexual and voiding function was off- set by the disadvantage of close and lifelong follow- up with the aim of removing new rectal polyps, or excising the rectum before cancer develops.

Nowadays, restorative proctocolectomy with the formation of (IPAA), which preserves the sphincters as well as sexual and bladder function while nevertheless completely removing colorectal mucosa, is the procedure of choice in the elective treatment of patients affected by (UC) [4].

Amelioration of the technique reduced procedure morbidity; nevertheless, some unsatisfactory functional results led several authors to consider the importance of quality of life [9, 10].

Health-related quality of life (HRQL) is defined as the patient’s’ own appraisal of their current physical and mental health, social interactions, and general well- being . Knowledge of postoperative health status is important in decision- making about the type of operation necessary in patients with FAP and inflammatory bowel disease (IBD). Although long- term functional results, described by some authors, are excellent, there is a relevant incidence of complications related to the ileal pouch [11].

The difficulty of quantifying such dysfunction, and its impact on HRQL, make it necessary to use an investigative instrument that not only explores clini-

cal parameters of each patient but also his/ or her emotional and social function.

Several authors reported a. high level of satisfaction in patients submitted to colectomy in general [ [15, 16] and in particular to RPC [10, 12, 16]. Howev- er, despite the dramatic improvement of patients’

general condition, functional results are not always perfect. In fact, some patient complains of occasional episodes of soiling or urgency, elevated number of daily bowel movements, difficulties in pouch emptying or dietary restrictions. And even more, without such complications, patients with IPAA may refer to a conspicuous number of daily stool, and a certain degree of incontinence or urgency [16, 18].

The difficulty quantifying such dysfunction, and its impact on HRQL make it necessary to use an investigative instrument, that not only explores clinical parameters, especially bowel function (BF) of each patient but also his/ or her emotional and social function.

Many studies provide evidence that there is a statistically significant association between HRQL levels and BF [10]

Of the numerous BF characteristics, five appear to be of greater importance with regard to certain HRQL domains [18, 19, 38]. The physical function domain is improved with the ability to pass flatus independent of stool, physical role and mental health domains are improved with decreased stool frequency, social function domain is improved with increased stool retention time while perception of general health is improved with less diaper usage and less sexual dysfunction [18, 20].

RPC is generally considered to achieve better functional results and therefore HRQL in patients with than in those with UC.

Patients with UC usually have a higher overall complication rate and more pouch-related septic complications. Functional results are similar for day- time and nighttime stool frequency and the median duration that defecation could take.The use of antidiarrhoeal medications does not differ between patient with RPC affected by FAP and UC. Even

Quality of Life in the Pouch Patient

Gian Gaetano Delaini, Gianluca Colucci, Monica Fontana, Filippo Nifosì

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though pouchitis is more common in UC than FAP, many studies suggest that the functional outcome, quality of life and health and satisfaction with outcome is identical between the groups [19, 20].

HRQL after RPC in FAP Patients

The latest treatment of choice in FAP in the past two decades, has been RCP with IPAA, which preserves the sphincters as well as sexual and bladder function while nevertheless completely removing colorectal mucosa [19, 21].

However, increasing experience with long-term postoperative care of FAP patients has raised doubts as to whether – apart from its well-known elevated rate of complications [22, 23]

– IPAA really offers as much comfort as was ini- tially thought. Indeed, ileorectal anastomosis (IRA) in the upper third of the rectum is again being dis- cussed as an alternative procedure, and proposals have been made to base the choice between IPAA and IRA on an assessment of rectal cancer risk as defined by either the type of APC gene mutation, i.e. geno- type-phenotype correlation-based surgery or the number of rectal polyps found, or a combination of the two [24-27] and pouch polyposis may even occur [27, 28].

At the same time, increasing experience with the postoperative care of FAP patients has provided evidence that IPAA might not be as comfortable as orig- inally assumed [28-32].

Many studies comparing functional results of FAP patients with IPAA with patients with IRA point out that results for patients with IPAA were poorer regarding the number of bowel movements per day, leakage, pad usage, perianal skin problems, food avoidance and inability to distinguish gas. Results of the HRQL surveys, however, demonstrate no difference between the IPAA and IRA groups. The Physical and Mental Summary Scales for IPAA and IRA groups are not significantly different, and none of the eight dimensions of the SF-36 Health Survey demon- strated statistical differences between IPAA and IRA groups. Therefore, better functional results are not equated with better HRQL.

Although patients with the IRA have better functional results than those with IPAA, the measured HRQL as determined by a validated generic HRQL instrument is the same for both groups. These results suggest that all patients with FAP might be optimally treated with an IPAA. More importantly, they evidence that HRQL should play a greater role in the evaluation of care and treatment in colon rectal surgery [33]

For the most part, studies focusing on quality of

life [18, 32, 35] are difficult to interpret and compare, since different methods were used to measure function and quality of life. In summary, the main results of these studies show that both IRA and IPAA can be performed without postoperative mortality [21, 23, 32, 33]. However, subsequent complications are more common after IPAA [24, 26], with the lack of significance possibly due to the small number of patients, and IRA provides better overall continence function [24, 25, 28, 29, 33].

Nocturnal soiling and incontinence, in particular, as well as a significantly higher frequency of nighttime bowel movements, are responsible for this observation. Interestingly, IPAA does not inevitably lead to a lower quality of life compared with IRA. Ko et al. [17] observed no difference, while two reports judged IRA to be better, although statistical significance was lacking [28, 29, 34, 36].

Thus, the undoubtedly better function provided by IRA does not necessarily translate as improved quality of life, which is in good accord with other studies specifically investigating the relationship between continence function and quality of life [17, 33, 35 , 37].

Continence function, which is the main factor influencing patient comfort after rectal surgery, is also related to age and gender. Older and female patients are more likely to suffer from incontinence, especially after rectal surgery.

A major unresolved problem is the relationship between continence function and quality of life. It is still a moot point whether and to what extent, disor- dered continence inevitably leads to impaired quality of life.

Nor is the patient’s ability to psychologically com- pensate for reduced function and, as it were, restore previous quality of life well understood. Many studies found no significant correlation between function and quality of life [17, 33]. In contrast, many others showed that continence function in otherwise healthy patients does affect quality of life [37].

HRQL after RPC in UC Patients

Total proctocolectomy and IPAA is often advocated as the definitive treatment for UC [36, 4]. In fact, RPC with IPAA guarantees complete excision of the dis- eased bowel, reduction of cancer risk and preserves the natural route of defecation, so it can be fully considered as the first choice for the elective treatment of patients affected by UC who need surgical therapy [38, 39].

Amelioration of the technique and the increased surgical experience reduced procedure morbidity;

nevertheless, some unsatisfactory functional results

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may affect quality of life, which has led several authors to consider the importance of quality of life [39, 40] after this treatment.

The relatively young age of such patients and their subsequent life expectancy imposed an accurate analysis of quality of life that became the measure of thefor efficiency of the procedure. .

In fact the relatively young age of such patients and their subsequent life expectancy imposed an accurate analysis of quality of life that became the measure for efficiency of the procedure. So HRQL questionnaires are the indispensable instruments to assess the quality of surgery.

Although long-term functional results described by some authors, are excellent, there is a relevant incidence of complications related to ileal pouch [41]. Several authors reported a high level of satisfaction in patients submitted to colectomy in general [42-44] and in particular to RPC [44-47].

However, despite dramatic improvement of patients’ general conditions, functional results are not always perfect. In fact, some patients complains of occasional episodes of soiling or urgency, elevated number of daily bowel movements, difficulties in pouch emptying or dietary restrictions. And even more, also without such complications, patients with IPAA may refer a conspicuous number of daily stool and a certain degree of incontinence or urgency [47].

The difficulty of quantifying such dysfunction, and its impact on HRQL, make it necessary to use an investigative instrument, that not only explores clinical parameters of each patient but also his/ or her emotional and social function [48, 49].

Several authors report excellent long-term functional results of RPC with IPAA and HRQL compara- ble to those of healthy subjects, probably for the different consideration given to the emotional function, which is among the least important components of the Cleveland Global Quality of Life Score (CGQL), which is one of the most affirmed instrument used for HRQL analysis in RPC patients [44] .

On the contrary, according to some other authors , patients submitted to RPC for UC experience a long- term quality of life similar to those of UC patients, with mild or remission of disease activity because of long-term pouch complications, conspicuous number of daily stool or a certain degree of incontinence or urgency [42-44].

In particular, RPC patients reported HRQL scores similar to to those with moderate UC for intestinal and systemic symptoms and similar to those with mild remission UC for emotional and social function.

The global scores indicate that RPC patients obtained similar scores to those with mild/ remission UC, so once again, we emphasise the role and weight of emotional and social function for HRQL [44]. RPC

patients have similar scores to healthy controls for actual quality of life and for energy levels as well as to moderate UC for actual quality of life to patients with mild/remission UC for quality of health and to mild/remission UC for energy levels.

Once again, this result emphasises the role and the weight of the emotional and social function for HRQL [44, 49].

Age, gender, marriage status, education, job, fer- tility after the operation, type of anastomosis, elective or urgent surgery, 3two- or three-stage surgery, number of operations, age at stoma closure and duration of UC have not anyno actual role in predict- ing long-term HRQL outcome. There are some other critical factors for a good HRQL outcome: use of drugs, number of daily bowel movements, presence of pouchitis, rectal stenosis, sinus tracts or occasional incontinence, and age at UC diagnosis or at ileostomy closure.

The subjective perception of being ill is still pres- ent in many patients, and it may be reinforced, in part, by the medical follow-up that patients undergo but even more by the use of drugs that some patients still must take. Furthermore, the emotional function of patients who had their UC diagnosed and were operated in late childhood did not improve even 10.3

± 7.0 years after their last operation. Only this item gives them a lower HRQL outcome (even if in the group of younger operated patients the difference is not statistically significant, probably because of the small number). Probably, this is not only due to more severe or fulminating onset of UC and higher incidence of pancolitis or postoperative pouchitis in childhood [50, 51] but also to the psychological trau- ma they suffered at this particularly fragile age.

So it is possible that they have grown up with the idea of being ill. These results should be considered by physicians when they are preparing a patient for the impact of RPC.

HRQL after RPC in Crohn’s Disease Patients

IPAA has come to represent the procedure of choice for patients requiring surgery for mucosal UC [36].

In contrast, a proven diagnosis of Crohn’s disease is generally held to preclude IPAA. However, patients with IPAA for apparent mucosal UC who are subse- quently found to have Crohn’s disease have a vari- able course.

In fact, up to 15% of cases of UC are mistakenly diagnosed in patients with Crohn’s disease because of overlap in the clinical, endoscopic and histologic findings [52-54]. Even the classic histologic abnor- mality of Crohn’s disease, noncaseating granuloma, is found in only 50-60% of resected specimens [54].

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As a result, as many as 3.5-9% of patients who undergo total proctocolectomy and IPAA are found to develop recurrent Crohn’s disease in the ileal pouch [55, 56] so that, in retrospect, these individu- als presumably had surgery for Crohn’s disease involving the colon rather than for UC.

In general, patients with Crohn’s disease are not usually offered IPAA because recurrence, refractory fistulase, abscesses and strictures, extraintestinal manifestation and the high morbidity in these patients [57, 58,] may lead to a higher incidence of pouch failure. Neoplastic transformation of the pelvic pouch has also been reported, particularly in patients with chronic pouchitis.

Moreover, when total proctocolectomy is required for patients with intractable Crohn’s colitis (i.e. gran- ulomatous colitis), some surgeons advocate an IPAA in select cases to avoid the need for a permanent end ileostomy [59, 60].

However, surgery for Crohn’s disease is only a temporary intervention in most cases because of the high rate of recurrencet: the reported prevalence of radiographic or endoscopic recurrence of Crohn’s disease in the small bowel at or near surgical anastomoses is as high as 18-55% at 5 years and 40-76% at 10 years [61].

Most colorectal surgeons therefore do not recom- mend an IPAA for Crohn’s colitis because of the high risk of developing recurrent Crohn’s disease in the ileal pouch and the high morbidity in these patients [62-66].

Nevertheless the secondary diagnosis of Crohn’s disease after IPAA is associated with protracted free- dom from clinically evident Crohn’s disease, low pouch-loss rate and good functional outcome. Such results can only be improved by the continued development of medical strategies for long-term suppres- sion of Crohn’s disease. These data support a prospective evaluation of IPAA in selected patients with Crohn’s disease. [62-64].

Despite the fact that a diagnosis of Crohn’s disease is currently considered a contraindication for an IPAA, some patients with secondary diagnosis of Crohn’s disease have good functional outcome and quality of life after restorative proctocolectomy. [65, 66].

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