Accuracy of patient-reported bowel symptoms for fecal incontinence: Historical recall versus Prospective evaluation

Abstract

Introduction:

Fecal incontinence (FI) is characterized by irregular and unpredictable bowel symptoms. An accurate history of symptoms is important for diagnosis and guiding management. Whether a patient’s bowel history is reliable or if there is recall bias is unknown. Aim: To evaluate the accuracy of FI symptoms based on patient’s recall compared with a prospective stool diary.

Methods:

FI (Rome IV) patients completed a bowel questionnaire that included leakage episodes and stool consistency. Subsequently they completed a one-week FI stool diary. Agreement and correlation between historical recall and stool diary were compared.

Results:

One hundred patients participated. On average they reported 12 bowel movements (BMs) and 5 FI episodes per week. Fifty-two percent had completed under-graduation, 33% high school and 15% post-graduation. Using recall, 23% of patients accurately reported the number of FI episodes, whereas 41% underestimated and 36% overestimated its prevalence compared to the FI diary. Similarly, the concordance for the number of BMs was 30%, urgency was 54%, amount of stool leakage was 16% and stool consistency was 12.5%. The concordance for nocturnal FI events, use of pads and lack of stool awareness were 63%,75% and 66.6% respectively.

Conclusion:

There is poor concordance for key bowel symptoms including the number of FI episodes as reported by FI patients, suggesting significant recall bias. Thus, historical recall of chronic FI symptoms may be less accurate. A prospective stool diary could provide more accurate information for the evaluation of FI patients.

Graphical Abstract

Conclusions: There is poor concordance for key bowel symptoms, suggesting significant recall bias in FI patients. A prospective stool diary could be more accurate.

Introduction:

Fecal incontinence (FI) is defined as the involuntary loss of solid or liquid stool for at least three months(1), and is prevalent in 7–15% of the population (2,3). However, its prevalence is much higher, because 60–90% of patients do not discuss this problem with their physician(4). FI also has significant impact on the quality of life and social life (2,5). It is associated with increased care-giver fatigue, higher economic burden, increased hospitalization, and higher psychological distress(2,5,6).

Society guidelines(7) have recommended that the first step in the evaluation of a patient with FI is a detailed medical history. Such historical information is also routinely utilized both for clinical and research-based outcome assessments. An accurate history is an inexpensive and useful evaluation tool. However, the reliability of a patients’ history has been questioned because of recall bias in the diagnosis of chronic conditions such as genitourinary diseases, arthritis, chronic obstructive lung disease, depression and chronic pain (8–12).

Further, the lack of a specific biomarker for FI renders patient-reported symptoms as the primary avenue for clinical decision-making and treatment (2,6,7,13). Because patients often remember the most distressing or bothersome or extreme symptoms, clinical history may be less accurate. Our aim was to evaluate 1) the accuracy of patient reported bowel symptoms using recall and compare this with their own recording of symptoms on a prospective stool diary; 2) examine the concordance for bowel and FI symptoms; 3) assess the factors that influence the reliability of FI symptoms when using recall.

Materials and Methods:

Patients presenting to our tertiary care center with FI were recruited and included if they reported at least one episode of either liquid or solid stool leakage per week, over the previous six months (7). Subjects with inflammatory bowel disease, neurologic disorders (e.g., cerebral vascular disease, multiple sclerosis, spinal cord injury, and epileptic disorders), severe comorbidities (end stage heart failure, COPD, or chronic renal failure) and chronic opioid users were excluded. The study was approved by the Augusta University Institutional Review Board (619411).

Once eligible, subjects filled out a detailed questionnaire (Supplement table 1) to assess nine FI-related symptoms and demographic information. Thereafter, subjects were asked to complete a daily, prospective, FI stool diary (Supplement figure 1) for 1-week (15).

Data analysis:

We compared the concordance of symptoms as reported by patients on a bowel questionnaire with those recorded on the prospective stool diary (Supplement figure -1). The variables on the questionnaire included the frequency of FI episodes (range: <1/week, once a week, 2–3 times/week, =/> once a day and others), and frequency of bowel movements (range: >/= 3/day, 1–2/day, 2–3/week, once/week, and others). The amount of FI was rated by the patient as mild=1, moderate=2, and severe=3. Stool urgency (inability to postpone a bowel movement for more than 15 minutes) was rated as yes or no, and usage of pads was described as: never, occasionally, often, very often and almost always. The categories of never and occasionally were considered as absence of symptom, while the remaining three categories indicated the presence of symptoms on for concordance assessment. The time of FI event was assessed as either occurring during the day or at night. The awareness of stool sensation before a leakage event was recorded as either no sensation, strong urge, or normal awareness, both on the questionnaire and stool diary. The stool consistency was recorded using the Bristol stool form scale (BSFS), and ranging from type 1 to type 7, with both assessments (Supplementary Tables 1, & supplementary Figure 1). Canonical correlation was used to compare the stool consistency.

Additionally, a demographic questionnaire that enquired about race, education, marital status, FI type (urge, passive, and both) and duration of FI was also obtained. A multivariant logistic regression analysis with odds ratios (OR) and 95% confidence intervals (CIs) were calculated to assess the factors that affected concordance between the variables.

Results:

Demographics:

The demographic features and symptoms are summarized in Table 1. One hundred patients with FI were evaluated. Of these, 66% were white, 31% were black, and 3% were Hispanic. Fifty-two percent completed under-graduation studies, 33% had a high school diploma and 15% completed post-graduate studies. The median (range) number of bowel movements (BMs)/week were 12 (8–21), and the median number of FI episodes/ week as reported on the stool diary were 5 (3–10). A summary of baseline symptoms is provided in table-2. In addition, 36% of patients had predominantly urge type of FI, 33% had passive type of FI, and 31% of patients had mixed urge and passive type of FI.

Table 1.

Demographic data and prevalence of fecal incontinence symptoms.

Age (years)	60 +/− 11
Female/Male	69/31
No. of Bowel movements/ week	12 (8-21)
No. of FI episodes/ week	5 (3-10)
Duration of symptoms (years)	5 (2-10)
Race
White	66 (66%)
Black	31 (31%)
Hispanic	2 (2%)
Unknwon	1(1%)
Marriage status
Married	46 (46%)
Divorced	17 (17%)
Single	8 (8%)
Widowed	5 (5%)
Unknown	24 (24%)
Education Level
College	39 (39%)
High school	29 (29%)
Master’s degree	12 (12%)
Tech School	9 (9%)
Doctorate	4 (4%)
Unknown	7 (7%)
FI Type
Urgency	36 (36%)
Passive	33 (33%)
Both	31 (31%)

Table 2.

Baseline symptoms Mean ± SEM

FI symptoms	Questionnaire (n=100)	Stool Diary (n=100)
Pad usage	72%	60%
Awareness for stool leakage	69%	73%
Nighttime leakage	52%	38%
Urgency	47%	70%
Fecal Incontinence episodes✧	3±1.1	3.3±0.97
No of Bowel Movement^	1.8±0.86	1.9±0.78
FI severity#	1.5±0.7	1.5±0.6
BM consistency*	4.2±1.5	4.3±1.2
Consistency of stool leakage*	5.5±1.5	5.1±1.4

^✧Scale: <1/week, once a week, 2-3 times/week, =/> once a day and others

^{^}Scale: >/= 3/day, 1-2/day, 2-3/week, once/week, and others

^#Scale: 0 (no), 1 (mild), 2 (moderate), 3 (severe)

^*Bristol stool scale 1-7

Concordance for key FI symptoms

The concordance for the number of bowel movements was low at 30% with another 30% of FI patients overestimating and 40% underestimating the stool frequency (Fig. 1). Likewise, the number of FI episodes was concordant in 23% of symptoms, with another 36% of patients overestimating and 41% underestimating these events. The amount of leakage had the lowest concordance at 16%. The occurrence of stool urgency and the number of nocturnal FI episodes had an average concordance value of 54% and 63%, respectively. There was good concordance for the sensation of awareness before stool leakage at 66.66%, and for the use of pads at 75% respectively. Also, we found a canonical correlation of 0.65 for stool consistency of bowel movements and 0.46 for fecal incontinence events. These findings provide moderate correlation for both stool consistency of bowel movements and for fecal incontinence evets.

Figure 1.

Concordance of FI symptoms as assessed by a Questionnaire and a FI stool diary.

Multivariant Logistic Regression analysis

To study how concordance is affected by the patient characteristics, we fit individual univariate logistic regression models with concordance as response and the individual demographic variables as covariates. The logistic regression analysis showed that patients with a college degree or higher had a better level of concordance compared to those with undergraduate or high school diploma for the frequency of BM (OR=0.36, 95% CI 0.12 to 0.99), but not for the other symptoms. The occurrence of nocturnal stool leakage had lower concordance in non-white patients compared to Caucasian patients (OR=0.37, 95% CI 0.14 to 0.89). Variables such as age, gender and type of FI did not affect the concordance of FI symptoms. Data is shown in Table 3.

Table 3:

Logistic regression analysis for the concordance of patient demographic data and FI symptoms between the stool diary and the questionnaire

	No. of FI episodes	No. of BMs	Amount of Leakage	Nocturnal FI	Pad use	stool urgency	Awareness
	OR (95% CIs)	OR (95%CIs)	OR (95% CIs)	OR (95% Cis)	OR (95% CIs)	OR (95% Cis)	OR (95% CIs)
Gender
Female	Ref	Ref	Ref	Ref	Ref	Ref	Ref
Male	0.7(0.3,1.7)	0.6(0.2,1.7)	3.1(0.8,11.8)	1.2(0.5,3.2)	0.8 (0.3,2.4)	0.7(0.3,1.7)	0.1(0.01,2.2)
Age	0.9(0.9, 1)	0.9(0.9, 1.0)	0.9(0.9,1.05)	1.02(0.9, 1.06)	0.9(0.3,1.04)	0.9(0.9,1.01)	0.9(0.3,1)
Race
White	Ref	Ref	Ref	Ref	Ref	Ref
Non-White	0.94(0.4-2.1)	1.3(0.5-3.5)	0.6(0.1-2.9)	0.4(0.1,0.9)*	1.1(0.4,3.2)	0.6(0.2-1.4)	1.8(0.3, 15)
Education
College/Masters/PhD	Ref	Ref	Ref	Ref	Ref	Ref
High school/Tech school	0.8(0.3-1.9)	0.3(0.12-0.99)	0.36(0.03-2.06)	0.7(0.3-1.7)	0.7(0.2, 1.9)	1.4(0.6-3.3)	2(0.35-16.07)(
Marital Status
Married	Ref	Ref	Ref	Ref	Ref	Ref	Ref
Single/Widowed/Divorced	1.4(0.5-3.6)	0.6(0.2-1.7)	1.5(0.39-6.2)	1.09(0.4-2.9)	1.57(0.5-5.51)	0.4(0.19-1.2)	3(0.6-17)
FI Type
Urgency	Ref	Ref	Ref	Ref	Ref	Ref
Passive	0.5 (0.1,1.4)	0.3(0.05,1.8)	0.3(0.05,1.8)	0.4(0.1,1.1)	1.1(0.3, 3.8)	0.7(0.2,2.1)

Ref, Reference

^*p<0.05

Discussion:

Our study shows that generally there is poor concordance for key FI symptoms such as the number of stool leakage episodes, the number of bowel movements, urgency, stool consistency and the amount of leakage as reported by patients using recall when compared to their own reports on a prospective stool diary. Patients were able to recall the sensation of awareness prior to an incontinence event, and the usage of pads fairly accurately. In addition, age, gender, and type of FI such as urge or passive FI, did not affect the concordance of FI symptoms. A key finding of our study was that a significantly higher proportion of patients either underestimated or overestimated their bowel symptoms, and thereby did not provide accurate information. Thus there appears to be a significant recall bias in reporting their symptoms. Our observation concurs with those from primary care, where recall bias was found for chronic conditions such as depression, chronic pain, dyspnea or fatigue (8–12). Thus, relying entirely on a subject’s complaint or description of their bowel habit for making a specific diagnosis or management plan may be less accurate in FI patients.

Our findings not only confirm but extend the observations of another study which showed that FI severity was under-reported by patients when using recall (16). However, only 3 symptoms were assessed whereas we performed a comprehensive assessment of 9 symptoms associated with FI. Also, a validated FI stool diary was not used. Only a handful of studies have evaluated the patients’ reliability to recall the symptoms accurately for anorectal disorders, particularly in FI (16,17). Another study of IBS patients also noted that majority of patients (60%) did not recall GI symptoms accurately (17). Similarly, a lack of concordance between prospective diaries and recall was reported in urinary incontinence (18–22). Likewise, studies describing constipation-related symptoms have also reported recall bias on questionnaire that under-estimated the frequency of bowel movements (23,24). Given the potential impact of an accurate history especially on clinical diagnosis and management of FI, such information is vital.

This is the first comprehensive survey of FI symptoms using validated instruments. We found that gender did not influence either the frequency or the severity of FI events, although in urinary incontinence, women had overestimated their day time episodes while men had over-reported nocturnal incontinence (18,19). Other studies have also shown a lack of concordance between recall of symptoms and prospective diary for pelvic floor problems(20,21), although one study showed better short time recollection of symptoms for lower urinary tract symptoms(22).

Our findings are consistent with a previous study (16) which showed that subjects had significantly underestimated the number of FI episodes and reaffirms the under reporting in other epidemiological studies (16, 17). The exact reasons remain unclear, but may be driven by the embarrassment and social stigma associated with FI(2). The inability of patients to honestly describe or discuss their bowel problems could potentially lead to an underestimation and risk bias for reporting FI episodes (16), leading to either improper diagnosis or inadequate care.

Generally, the patient’s ability to respond to a binary question seems to be more accurate than the degree of its occurrence. In this regard, we found that patients were able to recall the awareness of stooling sensation before incontinence and usage of pads more accurately. Also, these symptoms are often distressing or life changing, and consequently may lend itself to better concordance. However, patients could not accurately recall the prevalence of urgency.

FI prevalence is higher among older patients and residents in nursing homes (2), a sub-group that is vulnerable to recall bias, owing to coexisting factors such as dementia, and poor mobility. However, we did not observe any differences in our logistic regression analysis using age as a variable, although nursing home patients were excluded from our study. The education level appears to influence the accuracy as patients with a higher degree had better level of concordance for FI symptoms than those with lesser education.

Most physicians do not use a standardized template for eliciting history when evaluating a patient with suspected FI. Further, given the increasing imposition on physician’s time for rapid turnover in clinics, use of EMR, and decreased amount of time spent on face to face consultation with a patient. The use of a prospective stool diary or digital diaries such as the FI stool diary app or (25) @My GI health app (26) may provide more accurate information for documenting the patients’ symptoms.

Our study limitations include a small number of patient population with more severe symptoms, who were recruited from a specialist clinic in a tertiary care center and not from the community. Also, because patients filled out questionnaire based on recall, and then completed the prospective diary, it is possible that the prevalence of symptoms may have been variable during the two periods contributing to the discrepancy. However, the same methodology has been used for conducting such studies (8–12). Whether a repeat prospective diary at another time period could have shed additional information and the impact of accurate history on FI management merits further study. Interestingly, a pediatric study on recall of diapers used in children when compared to the children’s/maternal recall showed discordance (27,28).

The study aimed to assess recall bias but did not evaluate the severity of FI symptoms. By utilizing a validated symptom severity tool, the findings may have provided insights regarding the impact of recall bias on the perception and interpretation of symptom severity.

Overall, we found a poor concordance between the patients’ ability to recall their FI symptoms and those observed prospectively. Hence, clinicians and researchers should consider better methods for chronicling bowel symptoms, especially in patients with a chronic illness that varies on a daily basis. Our findings emphasize a need for the use of prospective assessments such as a paper stool diary or digital stool diary apps to improve the accuracy of patient-reported symptoms.

Supplementary Material

Fig S1

Supplement Figure 1. Prospective paper stool diary filled out by the subjects.

Practitioner points:

1. Assessment of bowel symptoms is often the first step in the clinical evaluation of a patient with fecal incontinence, but its accuracy has not been examined.

2. In a prospective study, we found that the patient’s recall of bowel symptoms are considerably different than those reported on a prospective stool diary assessment.This suggests that FI symptoms, are likely affected by a recall bias.

3. This inaccuracy may be overcome by asking FI patients to keep a prospective stool diary of bowel symptoms.