A
B
C
D
Continent to solid and liquid stool and flatus
Continent to solid and liquid stool but not to flatus
Continent to solid but not to liquid stool or flatus
Incontinent to solid and liquid stool and flatus
Degree of incontinence | Definition |
---|---|
None (Baxter et al. 2003) (1) | No episodes of incontinence |
Medium (Streiner and Norman 1994) (2) | Episodes of incontinence to solid stool, incontinence to gas, incontinence to liquid stool only or soiling |
Severe (Keszei et al. 2010) (3) | Incontinence to solid stool at all times |
Table 12.3
Fecal incontinence grading scales available in the literature
Author | Year | Grades | Spectrum |
---|---|---|---|
Parks (1975) | 1975 | 4 | Normal → no control of solid stool |
Broden et al. (1988) | 1988 | 3 | None → incontinence to stool at all times |
Keighley and Fielding (1983) | 1983 | 3 | Minor leakage (<1/month) → severe (wear pad on most days) |
Hiltunen et al. (1986) | 1986 | 3 | Gross FI → continent |
Rudd (1979) | 1979 | 5 | Perfect continence → totally unsatisfactory, necessitates colostomy |
Corman (1985) | 1985 | 4 | Excellent → poor (FI to solid stool, requires colostomy) |
Williams et al. (1991) | 1991 | 5 | Continent → frequent incontinence to solid and liquid stool |
Rainey et al. (1990) | 1990 | 3 | Continent of solid +/− flatus → incontinent of all stool |
Womack et al. (1988) | 1988 | 4 | Continent → incontinent to solid and liquid stool and flatus |
3.2 Summary Scores for Fecal Incontinence
Summary scores evolved to address some of the weaknesses of grading scales. Summary scores assign values for certain categories of incontinence reflecting the severity of symptoms and create a summary score by summing up these individual values. The number of items in the different summary scores ranges from three to seven (with the exception of the American Medical Systems score that has 39 items), while the range of overall attainable scores is 0 to 31 points (with the exception of the American Medical Systems score that has 120 points) (Table 12.4). Thus, the summary scores are far less obtuse than the grading scales and have a greater ability to discriminate finite differences between patients and small changes in symptoms with treatment. All summary scores are similar in that they evaluate solid stool, liquid stool, and gas incontinence. Furthermore, in all the summary scoring tools, the frequency of incontinence contributes to severity of the overall symptom score. However, the scores differ in the definition of varying frequencies. For example, the most severe frequency may be described as more than one accident per week, daily accidents, or two or more accidents per day (Table 12.4). On the other end of the spectrum, some scores have a category for no incontinence, while others define the least severe state of incontinence as less than one accident per month.
Table 12.4
Fecal incontinence summary scores available in the literature
Score | Author | Year | Range | Item | Spectrum | Validity tested | Reliability tested |
---|---|---|---|---|---|---|---|
Incontinence score system | Miller et al. (1988) | 1988 | 1–9 | 3 | <1/month → >1/week | + | − |
Anal incontinence score | Rothenberger (1989) | 1989 | 0–30 | 4 | <1/month → >1/week | + | − |
Pescatori grading and scoring of FI | Pescatori et al. (1992) | 1992 | 0–9 | 6 | <1/week → daily | + | ~ |
Wexner/Cleveland Clinic Florida | Jorge and Wexner (1993) | 1993 | 0–20 | 5 | <1/month → >2/day | + | + |
Continence scoring system | Lunnis et al. (1994) | 1994 | 0–13 | 6 | <1/month → most days | + | − |
Vaizey/St. Mark’s score | Vaizey et al. (1999) | 1999 | 0–24 | 5 | 1/month → 1/day | + | + |
Fecal Incontinence Severity Index (FISI) | Rockwood et al. (1999) | 1999 | 0–61 | 6a | 1–3/month → >2/day | + | + |
Mayo FI questionnaire | Reilly et al. (2000) | 2000 | 0–30 | 6 | n/a | + | − |
FI questionnaire intended for phone/mail | Malouf et al. (2000) | 2000 | None | 3 | <1/month → daily | + | − |
American Medical Systems scale | AMS ® (O’Brien et al. 2004) | 2000 | 0–120 | 39 | Never → >1/day | + | + |
Outcome tool for surgical management of FI | Hull et al. (2001) | 2001 | 0–31 | 4 | <1/month → >1/week | + | − |
Clinical bowel function scoring system | Bai et al. (2002) | 2002 | 0–12 | 6 | Variable | + | − |
Anal sphincter replacement scoring system | Violi et al. (2002) | 2002 | 0–20 | 7a | Never → always | + | − |
Three of the most widely used and cited summary scores for fecal incontinence (in decreasing order of peer-reviewed publication citations) are the Wexner/Cleveland Clinic Florida fecal incontinence score (Wexner/CCF FIS), the Vaizey/St. Mark’s fecal incontinence score (Vaizey/St. Mark’s FIS), and the Fecal Incontinence Severity Index (FISI). The Wexner/CCF FIS, published in 1993, is composed of 5 items, each scored on a scale of 0 to 4, allowing for a maximum of 20 points for the most severe incontinence (Table 12.5) (Jorge and Wexner 1993). Each of the types of incontinence presentations (solid, liquid, or gas incontinence) is graded equally in this summary score. The Wexner/CCF FIS is by far the most widely cited fecal incontinence score in the peer-reviewed literature, owing to its simplicity of use, availability of a clinically important threshold, exclusive focus on symptoms related to anal sphincter impairment, and its demonstrated validity and reliability. Reflecting its versatility and widespread use, this summary score has been translated and validated to numerous languages.
Never | Rarely <1/month | Sometimes <1/week, ≥ 1/month | Usually <1/day, ≥ 1/week | Always ≥1/day | |
---|---|---|---|---|---|
Solid | 0 | 1 | 2 | 3 | 4 |
Liquid | 0 | 1 | 2 | 3 | 4 |
Gas | 0 | 1 | 2 | 3 | 4 |
Wears a pad | 0 | 1 | 2 | 3 | 4 |
Lifestyle alteration | 0 | 1 | 2 | 3 | 4 |
The Vaizey/St. Mark’s FIS, published in 1999, is also commonly used in clinical studies and was based on the Wexner/CCF FIS with two additional items for assessment: the use of constipating medication and the presence of fecal urgency (Table 12.6) (Vaizey et al. 1999). The authors chose to use relative weighting for the items in this score, such that pad use and constipating medications were weighted with 2 points and the remaining items received 4 points, for a total score of 24.
The Fecal Incontinence Severity Index (FISI) is another validated score that is composed of a 20-cell matrix table that addresses type (gas, mucus, liquid, and solid) and frequency (5 categories) of incontinence episodes, which, like the other aforementioned scores, generates a summary score (Rockwood et al. 1999). Developed in 2000 by an American Society of Colon and Rectal Surgeons task force, the FISI is a weighted summary score, created by input from colorectal surgeons and patients. The incontinence categories assessed were determined by the authors. They developed two identical matrices (Table 12.7): one for actual scoring of the individual patient’s symptoms and one for weighting. The weighting matrices were completed by 26 colorectal surgeons and 34 patients with fecal incontinence. This resulted in a summary score that ranges from 0 to 61, reflecting frequency of symptoms that range from none to two or more times per day. Though surgeon and patient rankings correlated well, surgeons gave significantly higher weights to incontinence of solid stool, reflecting a physiological interpretation of the event. Conversely, patients rated liquid and solid stool the same and rated gas incontinence significantly higher than surgeons. The authors did not advocate preferential use of the surgeon or the patient weights. Construct validity of the FISI was demonstrated in another study, where patients with worse symptoms had significantly higher FISI scores. Furthermore, severity rankings correlated with 3 out 4 items in the FIQoL scale (Rockwood et al. 1999).
The American Medical Systems ® (AMS) score is another summary score described in the literature but not commonly used (Table 12.4) (American Medical Systems 1996). It is comprised of 39 questions, with a total score ranging from 0 to 120. The AMS score requires a retrospective evaluation of the last 4 weeks and has six levels of severity ranging from never to several times per day. Though this degree of detail and large range of possible values should yield strong distinguishing capacity, this does not seem to be the case. Created to assess the outcomes of the artificial bowel sphincter, the complexity of this score has limited its use, mostly to research purposes.
Vaizey et al. compared the Vaizey/St. Mark’s, Pescatori, Wexner/CCF, and the AMS scores. The authors found the highest correlation between the Vaizey/St. Mark’s and Wexner/CCF score and the lowest correlation with AMS score. They also found that detection of change was greatest for the Vaizey/St. Mark’s and Wexner/CCF scores (Vaizey et al. 1999). Furthermore, Hussain et al. recently assessed intra- and interobserver reliability of the Vaizey/St. Mark’s and Wexner/CCF scores (Hussain et al. 2014). To assess intraobserver reliability, each patient was asked to complete both assessments initially at recruitment and then 6 weeks later. No alteration to medications or treatment occurred during this interval. For interobserver reliability, both scores were also completed by a physician and a nurse with the patient. In a group of 39 patients, both scores demonstrated excellent intra- and interobserver reliability.
3.2.1 The Weight Debate
Though all summary scores include incontinence to solid stool, liquid stool, and flatus, some summary scores use equal weights, while others do not. The Wexner/CCF score weighs each item on a scale of 0 (never) to 4 (more than once per day). Thus, in this summary score, there is no judgment by the authors as to which type of incontinence is worse. Other authors chose a different approach and assigned different weights to the same frequencies of different items within the scoring tool. The authors of the Vaizey/St. Mark’s score chose lesser weight for pad use and constipating medications that reflected their belief that these items may represent a subjective fear of social embarrassment, rather than actual frequency. However, again, such a method of assigning weights may not reflect the subjective patient experience of incontinence (Baxter et al. 2003). As seen in the FISI, patients and surgeons do not value all types of incontinence in the same way; thus, using surgeon-developed weights may not reflect the patient’s experience which is paramount in describing a symptom. Thus, though conceptually intuitive, weighted summary scores add a degree of increased subjectivity. Firstly, who is the most appropriate person to assign the weights: patients or surgeons? If patients, should it be a standardized weighting, or should each individual patient set the relevant weights for themselves, that is, a self-derived weighting scheme? Although weights give additional information, they also add complexity and perhaps subjectivity to the tool, making it less practical for everyday clinical use. The most frequently cited scores are the simple non-weighted scoring systems as they are easy and practical to use.
3.2.2 Inclusion of a Measure of Impact Within the Summary Score
Another approach to including the patient’s experience of the symptom, without weighting, is the inclusion of a measure of impact on the patient’s life, by including either coping mechanisms, lifestyle alteration, or some other measure of quality of life. The Wexner/CCF score includes two items which address impact: changes in lifestyle and wearing a pad. These items serve as measures of the patient’s experience of the symptom and their resultant quality of life. Similarly, the Vaizey/St. Mark’s score uses the same items, in addition to constipating medications. These measures of impact have proven to be quite important as patients may limit the severity of their incontinence by altering their lifestyle; that is, a patient might have only infrequent episodes of incontinence by severely restricting their activities so that they can be close to a bathroom at all times. Such a patient’s suffering would be appropriately detected by a tool that addresses impact but can be totally missed by a score that solely evaluates severity of incontinence. Thus, measuring impact in addition to severity can enrich our understanding of the patient’s symptom.
3.2.3 Inclusion of Items Not Related to Anal Sphincter Function
Some scores include other aspects of incontinence that are not solely related to sphincter function. For example, the Vaizey/St. Mark’s FIS (Table 12.6) includes urgency, the Lunniss score includes “difficulty cleaning” (Lunniss et al. 1994), and the Fecal Incontinence Severity Index (Table 12.7) includes mucous discharge. Such inclusions may not be most desirable as these symptoms are not exclusive of compromised anal sphincter function. For example, patients with severe proctitis could have mucous discharge and urgency though their underlying problem is proctitis rather than anal sphincter dysfunction.
Never | Rarely 1/4 weeks | Sometimes >1/4 weeks | Weekly ≥1/week | Daily ≥1/day | |
---|---|---|---|---|---|
Solid stool incontinence | 0 | 1 | 2 | 3 | 4 |
Liquid stool incontinence | 0 | 1 | 2 | 3 | 4 |
Gas incontinence | 0 | 1 | 2 | 3 | 4 |
Alteration in lifestyle | 0 | 1 | 2 | 3 | 4 |
No | Yes | ||||
Need to wear a pad or plug | 0 | 2 | |||
Constipating medication | 0 | 2 | |||
Lack of ability to defer defecation for 15 min | 0 | 4 |
2 or more times/day | 1 time/day | 2 or more times/week | 1 time/week | 1–3 times/month | |
---|---|---|---|---|---|
Gas | |||||
Mucous | |||||
Liquid | |||||
Solid |
3.2.4 Thresholds
Thresholds can be assigned to determine the level at which treatment can be useful or to predict a change in QoL with a change in symptom severity . In addition, thresholds are useful to determine the desired treatment effect and guide sample size calculations in research protocols. Such a useful threshold was determined for the Wexner/CCF score. In 2001, Rothbarth et al. evaluated 35 women with anterior sphincter defects who underwent sphincter repair. The patients completed the Wexner/CCF FIS , Gastrointestinal Quality of Life (GIQoL) index score , and the SF-36 score before and after sphincter repair. The authors found a strong correlation between a Wexner/CCF FIS greater than or equal to 10 and a lower GIQoL index and SF-36 score compared with the standard population (Rothbarth et al. 2001). Similarly, Damon and colleagues looked at clinical characteristics and quality of life in a cohort of 621 patients with fecal incontinence using the Wexner/CCF FIS and GIQoL index. They found a significant correlation between a Wexner/CCF FIS greater than or equal to 11 and the total GIQoL score. More recently, Brown et al. conducted the largest community-based fecal incontinence questionnaire to date, including 5,817 women 45 years and older (Brown et al. 2013). One of the questions asked was “Have you ever talked to a physician about accidental leakage of stool and/or gas?.” Data was available for 938 women who responded “yes,” and only 29 % of these responders with fecal incontinence reported that they sought care. Care seekers were more likely to have a primary care physician, have heard about fecal incontinence, and suffered longer with more severe leakage. Furthermore, the mean Wexner score of care seekers was 10.7 compared to non-care seekers who had a score of 7.5. Thus, a threshold of 10 or greater on the Wexner score also predicts women who seek care and predicts a significantly worse QoL.
In summary, the best and most used summary scores are the ones that balance between ease of use and a strong discriminatory ability. The Wexner/CCF and Vaizey/St. Mark’s scores both achieve this balance, as is demonstrated by their widespread use, validity, reliability, and correlation with QoL measures. Furthermore, thresholds within the summary scores allow clinicians to assess the impact of interventions and researchers to plan protocols for future treatments. Judging by the “weight” of the number of citations in peer reviewed publications, the Wexner/CCF has been more widely accepted perhaps due to its simplicity and lack of potentially subjective weightings.
4 Assessment of the Impact of Fecal Incontinence on Quality of Life
Quality of life (QoL) instruments are designed to measure the subjective perception of a given patient’s health state on their emotional and social life. Both generic and disease-specific QoL instruments have been used for fecal incontinence (Table 12.8). The most widely cited and well-validated QoL measure specifically designed to assess the impact of treatment for fecal incontinence is the Fecal Incontinence Quality of Life (FIQoL) scale. This scale was developed by the American Society of Colon and Rectal Surgeons in 2000 (Rockwood et al. 2000) and is composed of four domains: lifestyle, coping/behavior, depression/self-perception, and embarrassment, and contains a total of 29 items (Table 12.9).
Table 12.8
Fecal Incontinence Quality of Life measures
Score | Author | Year | Range | Domains | Summary score | Validity tested | Reliability tested |
---|---|---|---|---|---|---|---|
FIQoL scale | Rockwood et al. (2000) | 2000 | 0–29 | 4 | Yes | + | + |
Quality of life scale for FI in pediatrics | Bai et al. (2002) | 2000 | 0–12 | 6 | Yes | + | − |
Manchester Health Questionnaire | Bugg et al. (2001) | 2001 | 0–100 | 10 | Yes | + | + |
Pelvic Floor Impact Questionnaire and Disease Inventory (PFIQ-7, PFDI-20) | Barber et al. (2001) | 2001 | 0–400 | 3 | Yes | + | − |
TyPE Specification | Wexner et al. (2002) | 2002 | – | 14 | No | + | − |
Modified Manchester Health Questionnaire for phone interview | Kwon et al. (2006) | 2003 | – | 8 | No | + | − |
Simple QoL FI questionnaire | Kyrsa et al. (2009) | 2009 | – | 5 | No | + | − |
Scale 1: lifestyle |
Que3B: I cannot do many of the things I want to do (agreement, 4 points) |
Que2A: I am afraid to go out (frequency, 4 points) |
Que2G: It is important to plan my schedule (daily activities) around my bowel pattern (frequency, 4 points) |
Que2E: I cut down on how much I eat before I go out (frequency, 4 points) |
Que2D: It is difficult for me to get out and do things like going to a movie or church (frequency, 4 points) |
Que3L: I avoid traveling by plane or train (agreement, 4 points) |
Que2H: I avoid traveling (frequency, 4 points) |
Que2B: I avoid visiting friends (frequency, 4 points) |
Que3M: I avoid going out to eat (agreement, 4 points) |
Que2C: I avoid staying overnight away from home (frequency, 4 points) |
Scoring = (Que3B + Que2A + Que2G + Que2E + Que2D + Que3L + Que2H + Que2B + Que3M + Que2C)/10 |
Scale 2: coping/behavior |
Que3H: I have sex less often than I would like to (agreement, 4 points) |
Que3J: The possibility of bowel accidents is always on my mind (agreement, 4 points) |
Que2J: I feel like I have no control over my bowels (frequency, 4 points) |
Que3N: Whenever I go someplace new, I specifically locate where the bathrooms are (agreement, 4 points) |
Que2I: I worry about not being able to get to the toilet in time (frequency, 4 points) |
Que3C: I worry about bowel accidents (agreement, 4 points) |
Que2M: I try to prevent bowel accidents by staying very near a bathroom (agreement, 4 points) |
Que2K: I can’t hold my bowel movement long enough to get to the bathroom (frequency, 4 points) |
Que2F: Whenever I am away from home, I try to stay near a restroom as much as possible (frequency, 4 points) |
Scoring = (Que3H + Que3J + Que2J + Que3N + Que2I + Que3C + Que2M + Que2K + Que2F)/9 |
Scale 3: depression |
Que1: In general, would you say your health is (excellent/poor, 5 points) |
Que3K: I am afraid to have sex (agreement, 4 points) |
Que3I: I feel different from other people (agreement, 4 points) |
Que3G: I enjoy life less (agreement, 4 points) |
Que3F: I feel like I am not a healthy person (agreement, 4 points) |
Que3D: I feel depressed (agreement, 4 points) |
Que4: During the past month, have you felt so sad, discouraged, hopeless, or had so many problems that you wondered if anything was worthwhile? (extremely so/not at all, 6 points) |
Scoring = [(Que1 × 4/5) + Que3K + Que3I + Que3G + Que3F + Que3D + (Que4 × 4/6)]/7 |
Scale 4: embarrassment |
Que2L: I leak stool without even knowing it (frequency, 4 points) |
Que3E: I worry about others smelling stool on me (agreement, 4 points) |
Que3A: I feel ashamed (agreement, 4 points) |
Scoring = (Que2L + Que3E + Que3A)/3 |
Que = question |
The FIQoL scale was determined to be reliable by test-retest through telephone interview assessments and was also determined to have strong internal consistency (Rockwood et al. 2000). The scale’s face and content validity were demonstrated through a pilot patient sample and an expert panel, respectively (Rockwood et al. 2000). Furthermore, incontinent patients had significantly worse FIQoL scores than continent patients, FIQoL scores correlated with a generic QoL scale (SF-36) and Wexner/CCF scores, demonstrating construct validity (Rockwood et al. 2000). This disease-specific QoL scale is a well-accepted research end point and has been translated and validated in several languages. In 2004, Rullier and colleagues tested the validity and reliability of a French translation of the FIQoL scale in a multicenter study including 100 patients with fecal incontinence (Rullier et al. 2004). They observed a good correlation between the lifestyle, depression, and coping/behavior scales. They also found that the FIQoL had good internal reliability for each scale (Cronbach’s alpha 0.78–0.92). Finally, they found that the FIQoL scale and French translation of the Wexner/CCF FIS had good correlation. Similarly, the Spanish translation of the FIQoL was assessed in a multicenter study of 118 patients with fecal incontinence and was found to have good to excellent internal reliability for all domains, and all domains significantly correlated with a generic questionnaire on health and scale of severity of fecal incontinence (Minguez et al. 2006).
5 Measuring Constipation
Constipation is another functional problem that can be difficult to describe. The symptoms and impact of these symptoms on a person’s quality of life are often quite challenging to quantify. Gradual acceptance of lifestyle alterations due to the chronicity of the symptoms makes quantitative description of lifestyle compromise challenging. The complex constellation of symptoms with constipation includes frequency of bowel movements, methods of evacuation, symptoms associated with evacuation itself, abdominal pain, and others.
Many scoring scales for constipation set threshold values for significant constipation. This method is required due to the complex nature of constipation and the variable reporting of the functional impact of certain aspects of constipation among patients. For example, some patients may experience significant abdominal pain, while others may control symptoms with digitation or laxative use. The overall impact on quality of life and function may be the same, though the symptoms are different. Because of the difficulty establishing threshold cutoffs, these values may be somewhat arbitrary. However, the vast majority of the most commonly cited constipation scoring systems have been validated (see Table 12.10). Thus, these threshold cutoffs, though they may have been established arbitrarily based on clinical observation, have been confirmed and validated based on statistical probability. All of the major constipation scoring systems are self-reported by the patient and non-weighted. They are relatively simple to complete, with Table 12.11 showing the score ranges and presence of defined threshold scores for each scoring system.
Table 12.10
Constipation scores available in the literature
Score | Author | Validity tested | Reliability tested |
---|---|---|---|
Constipation Assessment Scale | McMillan et al. (McMillan and Williams 1989) | + | + |
Revised Constipation Assessment Scale | Broussard et al. (Broussard 1998) | + | + |
Wexner/CCF Constipation Score (CCS) | Agachan et al. (1996) | + | + |
Patient Assessment of Constipation | Frank et al. (1999) | + | + |
Questionnaire for constipation and FI | Osterberg et al. (1996) | + | + |
Knowles Eccersley Scott Symptom (KESS) score | Knowles et al. (2000) | + | − |
Visual scale analog questionnaire (VSAQ) | Pamuq et al. (2003) | + | − |
Garrigues questionnaire | Garrigues et al. (2004) | ~ | − |
Table 12.11
Characteristics of scoring systems for constipation