Symptom severity and QOL scales for urinary incontinence

doi:10.1053/j.gastro.2003.10.059

Gastroenterology

Volume 126, Supplement 1, January 2004, Pages S114-S123

https://doi.org/10.1053/j.gastro.2003.10.059 Get rights and content

Abstract

Symptoms of incontinence are common, particularly among older people, and incontinence can have a severe effect on the quality of life of some individuals at any age. A number of treatments are available, most of which aim to reduce the occurrence of incontinent episodes or to limit the effects of the disorder on everyday life. In research and clinical practice, it is essential that the symptoms and effects of incontinence be properly assessed and recorded. The only valid means of measuring patients’ perspectives is through the use of psychometrically robust self-report questionnaires. Incontinence may be experienced as part of the symptom complex of a range of conditions (e.g., benign prostatic diseases or fistulas), and the effect of incontinence on quality of life varies depending on the severity of the condition and other psychosocial and medical factors. Questionnaires with acceptable levels of psychometric testing are identified and recommended for use in clinical practice and research investigations according to the following categories: (1) questionnaires to assess symptoms of incontinence, (2) generic health-related quality-of-life questionnaires to assess the effect of incontinence on quality of life, and (3) incontinence-specific measures to assess the effect and bothersomeness of incontinence on quality of life.

Section snippets

Relationships between questionnaires and clinical measures

The relationship among urinary symptoms, the results of urodynamic investigations, and quality-of-life impairment is complex. Each of these parameters is important in the assessment of patients with urinary incontinence, and it is tempting to speculate that they might be related in direct and meaningful ways. On the whole, however, few and weak relationships have been found between the presence of lower urinary tract symptoms (including incontinence) and clinical measures, including the results

Conclusion

Much progress has been made in recent years in the development and testing of questionnaires to assess symptoms and quality of life related to urinary incontinence. Researchers are strongly encouraged to use the recommended questionnaires identified in this article in clinical research. These instruments have achieved basic standards of sound psychometric properties necessary in self-report instruments. Investigators are also encouraged to publish findings on the reliability, validity, and

References (79)

H.J. Korman et al.
Success rate of modified Pereyra bladder neck suspension determined by outcomes analysis
J Urol
(1994)
T.A. Hutchinson et al.
Scientific problems in clinical scales
J Chronic Dis
(1979)
M. Follick et al.
Evaluation of a daily activity diary for chronic low back pain
Pain
(1984)
M.J. Barry et al.
Relationship of symptoms of prostatism to commonly used physiological and anatomical measures of the severity of benign prostatic hyperplasia
J Urol
(1993)
J. Corcos et al.
Quality of life assessment in men and women with urinary incontinence
J Urol
(2002)
J.L. Donovan et al.
Scoring the ICSmaleSF questionnaire
J Urol
(2000)
D. Robinson et al.
Relationship between patient reports of urinary incontinence symptoms and quality of life measures
Obstet Gynecol
(1998)
G.E. Lemack et al.
Predictability of urodynamic findings based on the Urogenital Distress Inventory-6 questionnaire
Urology
(1999)
R.S. Epstein et al.
Validation of a new quality of life questionnaire for benign prostatic hyperplasia
J Clin Epidemiol
(1992)
P.K. Sand et al.
Pelvic floor electrical stimulation in the treatment of genuine stress incontinencea multicenter, placebo-controlled trial
Am J Obstet Gynecol
(1995)

R. Brooks

EuroQolthe current state of play

Health Policy

(1996)

G. Kobelt

Economic considerations and outcome measurement in urge incontinence

Urology

(1997)

N. Fleshner et al.

The artificial urinary sphincter for post-radical prostatectomy incontinenceimpact on urinary symptoms and quality of life

J Urol

(1996)

D. Watkins-Bruner et al.

RTOG’s first quality of life study—RTOG 90–20a phase II trial of external beam radiation with etanidazole for locally advanced prostate cancer

Int J Radiat Oncol Biol Phys

(1995)

D.L. Patrick et al.

Quality of life of women with urinary incontinencefurther development of the incontinence quality of life instrument (I-QOL)

Urology

(1999)

F. Haab et al.

Quality of life and continence assessment of the artificial urinary sphincter in men with minimum 3.5 years of followup

J Urol

(1997)

S. Boyarsky et al.

New look at bladder neck obstruction by the Food and Drug Administration regulators

Am Assoc Genitourinary Surg

(1977)

M.L. Slevin et al.

Who should measure quality of life, the doctor or the patient?

Cancer

(1988)

C. Coscarrelli-Schag et al.

Karnofsky performance status revisitedreliability, validity and guidelines

J Clin Oncol

(1984)

R.A. Pearlman et al.

Quality of life in chronic diseasesperceptions of elderly patients

J Gerontol

(1988)

J.F. Wyman et al.

The urinary diary in evaluation of incontinent womena test-retest analysis

Obstet Gynecol

(1988)

C. Barnick

Frequency volume chart

J.J.M.C. de la Rosette et al.

Relationships between lower urinary tract symptoms and bladder outlet obstructionresults from the ICS-BPH study

Neurourol Urodyn

(1998)

K.E. el Din et al.

Reliability of the International Prostate Symptom Score in the assessment of patients with lower urinary tract symptoms and/or benign prostatic hyperplasia

J Urol

(1996)

J.M. Reynard et al.

The ICS-“BPH” studyuroflowmetry, lower urinary tract symptoms and bladder outlet obstruction

Br J Urol

(1998)

C. Norton

The effects of urinary incontinence in women

Int Rehabil Med

(1982)

S. Hunskaar et al.

The quality of life in women with urinary incontinence as measured by the sickness impact profile

J Am Geriatr Soc

(1991)

J.S. Uebersax et al.

Short forms to assess life quality and symptom distress for urinary incontinence in womenthe Incontinence Impact Questionnaire and the Urogenital Distress Inventory

Neurourol Urodyn

(1995)

J.F. Wyman et al.

Psychosocial impact of urinary incontinence in women

Obstet Gynecol

(1987)

J.L. Donovan et al.

Symptom and quality of life assessment

J.L. Donovan et al.

Symptom and quality of life assessment

S.A. Shumaker et al.

Health-related quality of life measures for women with urinary incontinencethe Incontinence Impact Questionnaire and the Urogenital Distress Inventory

Qual Life Res

(1994)

D.P. Lubeck et al.

A health related quality of life measure for use in patients with urge urinary incontinencea validation study

Qual Life Res

(1999)

C.J. Kelleher et al.

A new questionnaire to assess the quality of life of urinary incontinent women

Br J Obstet Gynaecol

(1997)

H. Sandvik et al.

Validation of a severity index in female urinary incontinence and its implementation in an epidemiological survey

J Epidemiol Community Health

(1993)

T. Hald et al.

A patient weighted symptom score system in the evaluation of uncomplicated benign prostatic hyperplasia

Scand J Urol Nephrol Suppl

(1991)

J.L. Donovan et al.

The ICS-“BPH” Studythe psychometric validity and reliability of the ICSmale questionnaire

Br J Urol

(1996)

S. Jackson et al.

The Bristol Female Lower Urinary Tract Symptoms questionnairedevelopment and psychometric testing

Br J Urol

(1996)

N. Black et al.

Development of a symptom severity index and a symptom impact index for stress incontinence in women

Neurourol Urodyn

(1996)

Cited by (52)

Successful treatment of eosinophilic cystitis with benralizumab
2020, Urology Case Reports
Eosinophilic cystitis is a rare form of interstitial cystitis. It can be chronic and debilitating due to urinary frequency, dysuria, incontinence, and frequent urinary tract infections. Prior attempts at treatment have included oral and intravesical steroids, antispasmodics, and antibiotics when indicated. Treatment of eosinophilic disorders has recently been improved with the use of monoclonal antibodies directed at interleukin 5. We report here a case of eosinophilic cystitis treated with the interleukin 5 antagonist, benralizumab. The patient had significant improvement in both quality of life measures and biopsy findings.
Cross-cultural adaptation and validation of the Moroccan version of the incontinence quality of life questionnaire (I-QoL) in urinary incontinence patients
2020, Journal of Gynecology Obstetrics and Human Reproduction
Citation Excerpt :
The International Scientific Committee has recommended investigating the quality of life (QOL) for incontinence sufferers [11]. The Standardization Committee of the ICS [12] suggested that the most valid way of measuring the presence, severity, and impact of a symptom or condition on patient's activities and well-being, is through the use of well-constructed, reliable and sensitive questionnaires studying quality of life (QOL) [2,13]. The role of quality of life questionnaires has been widely demonstrated to be useful in clinical practice to assess the effects on individual lives due to discomfort, embarrassment, withdrawal from social life, and interpersonal relationship disruptions.
Because of the importance and prevalence of incontinence in women, there is growing interest in the development and use of well-designed quality of life questionnaires. The objective of this study is to adapt and validate, the I-QoL, a quality of life questionnaire, in Moroccan dialect, and to assess its psychometric properties in people suffering from urinary incontinence
One hundred patients (77 % female) with a symptom of urinary incontinence participated in the study and filled out the Moroccan version of the questionnaire. The reliability and validity of the questionnaire were assessed by Cronbach’s alpha coefficient (α), the intraclass correlation coefficient (ICC), and confirmatory factor analysis.
The results showed that the Moroccan version of the I-QOL has very good psychometric properties. The overall I-QoL summary score and subscales showed high internal consistency (alpha ranging from 0.94 to 0.99). Inter-rater reliability was substantial for the three subscales and the total score. The ICC, assessing reproducibility at two weeks, ranged from 0.89 to 0.99, demonstrating the stability of the scores. The I-QOL was able to discriminate between different levels of self- perceived severity. Significant differences in I-QOL scores (p < 0.001) were observed when comparing I-QOL scores by the number of incontinence-related medical visits made by patients during the past year.
The Moroccan version of the I-QOL is a valid and reliable tool to determine the influence of urinary incontinence on health-related quality of life in Moroccan persons
Use of a Closed Diurnal Indwelling Catheter for Patients With Spinal Cord Disorders: A Pilot Study
2020, Urology
Citation Excerpt :
For study participants who completed the 24-week intervention and requested continued use, CDIC is an alternative that successfully addressed these concerns. Standardized questionnaires were selected to include both adult- and pediatric-validated measures as well as those previously applied in male and female individuals with spinal cord pathology, NGB, and urinary incontinence.17-22 Of note, there was an early significant decrease in physical limitations related to bladder function with CDIC.
To evaluate an alternative to clean intermittent catheterization (CIC) for individuals with neurogenic bladder for its effects on independence, privacy, and convenience. This prospective cohort study provides an initial assessment of quality of life, safety, and efficacy of closed diurnal indwelling catheterization (CDIC).
Individuals with spinal cord disorders using CIC were prospectively screened at multidisciplinary clinic appointments. During the 24-week intervention, a foley was placed each morning and capped between scheduled bladder drainage each 3-4 hours. After a maximum of 8 hours of CDIC use, CIC was resumed. Quality of life outcome measures (the Short Form Health Survey, King's Health Questionnaire, and Pediatric Quality of Life InventoryTM (PedsQL) questionnaires), clinic evaluations, labs, imaging, and urodynamics were obtained at specified interval visits planned after 4-, 12-, and 24 weeks of study participation and compared to baseline.
A total of 11 subjects enrolled; 8 completed the 24-week intervention. No significant difference with CDIC was observed in the Short Form Health Survey or PedsQL summary scores as compared to baseline. For the King's Health Questionnaire, physical limitations secondary to bladder function decreased significantly from baseline to the 4-week and 12-week (P = .02) but not 24-week visits. All 8 subjects who completed the 24-week intervention requested continued use. Early discontinuation occurred in 3 male participants due to urethral trauma (1) and incontinence (2). No increase in bacteriuria, urinary tract infections, or renal anatomic changes was observed.
This prospective study demonstrates that CDIC may be safe and effective for short-term use. This alternative to CIC for scheduled daytime bladder drainage for neurogenic bladder warrants further consideration.
The Effect of Urinary Incontinence on Health-related Quality of Life: Is It Similar in Men and Women?
2016, Urology
To compare the association between self-reported urinary incontinence (UI) and health-related quality of life (HRQoL) in men and women while taking chronic comorbidities into account, on the hypothesis that UI might negatively affect HRQoL differently in each sex.
In 2006, a total of 10,723 men (aged 57-67 years) and 3777 women (aged 52-67 years) participating in the GAZEL cohort (www.gazel.inserm.fr) completed a self-administered questionnaire including the Nottingham Health Profile to assess HRQoL. UI was defined as self-reported involuntary loss of urine in the past 12 months. Adjusted logistic regression models were fitted to estimate the association between impaired HRQoL and UI, taking age, chronic conditions, and other confounders into account. For each QoL dimension, we compared the strength of the associations between UI and HRQoL between the sexes by tests of interaction.
Women were more likely than men to report both UI (13.9% vs 2.7%) and impaired HRQoL. UI was associated with impaired HRQoL in both sexes, mainly in the dimensions of energy (OR = 3.17 in men [95% CI 2.49-4.04] and 2.11 in women [1.75-2.54]), social isolation (OR = 2.29 in men [1.74-3.02] and 1.75 in women [1.44-2.12]), and physical mobility (OR = 2.05 in men [1.62-2.60] and 2.27 in women [1.88-2.74]). There were no significant interactions between the sexes after adjustment.
UI was associated negatively with HRQoL in both sexes, mostly in the dimensions of energy, social isolation, and physical mobility. The association was similar in men and women after we took age, sociodemographic characteristics, and chronic diseases into account. The cross-sectional design of the analysis prevents any conclusion that UI induced an impairment of HRQoL, and no causal relation can be inferred.
Psychometric performance of the incontinence quality-of-life questionnaire among patients with overactive bladder and urinary incontinence
2013, Clinical Therapeutics
Citation Excerpt :
A large body of evidence has shown that OAB has a tremendous personal and societal impact.2 However, this impact is not well captured by more proximal measures of bladder function such as laboratory tests, urodynamic tests, and other clinical measures.3–7 Increased awareness of the importance of patient-reported outcomes (PROs) including symptoms, functional status, treatment satisfaction, and health-related quality of life (HRQOL) has made way for the inclusion of such measures to monitor the course of OAB and its treatment.
The Incontinence Quality-of-Life Instrument (I-QOL) is a condition-specific questionnaire that assesses the health-related QOL impact of urinary incontinence, but it has not been validated in patients with overactive bladder (OAB) who have been inadequately managed by anticholinergic therapy.
This study assessed the reliability and validity of the I-QOL among patients with OAB with urinary incontinence.
I-QOL scores were analyzed from a Phase II study that compared the efficacy and tolerability of onabotulinumtoxinA and placebo. Conceptual framework was confirmed via confirmatory factor analysis. Reliability was assessed using Cronbach’s alpha and intraclass correlation coefficients (ICCs). Validity was tested by comparing I-QOL scores to tertiles of urinary symptom severity. Effect size statistics estimated the ability of the I-QOL to detect change. Responder analysis with cumulative distribution function was plotted to show differentiation between treatment groups with respect to I-QOL scores.
Comparative fit indices ranged from 0.87 to 0.99 on the confirmatory factor analysis. I-QOL scores showed high internal consistency (0.86 ≤ Cronbach’s α ≤ 0.93), good test–retest reliability (0.68 ≤ ICC ≤ 0.84), and good differentiation between tertiles of increasing urinary symptom severity (all, P ≤ 0.002). Significant differences in I-QOL change scores were noted between responders and nonresponders across all responder definitions (all, P < 0.001) and corresponded with large effect sizes among responders to treatment (1.34 ≤ effect size ≤ 2.82).
This study demonstrated that OAB with urinary incontinence affects health-related QOL and that the I-QOL reliably and validly measures these impacts.
Validation, cultural adaptation and responsiveness of two pelvic-floor-specific quality-of-life questionnaires, PFDI-20 and PFIQ-7, in a Turkish population
2012, European Journal of Obstetrics and Gynecology and Reproductive Biology
The aim of the study was cultural adaptation, validation, and test for responsiveness of the short forms of the Pelvic Floor Distress Inventory (PFDI-20) and the Pelvic Floor Impact Questionnaire (PFIQ-7) in a Turkish population.
To evaluate their validity, questionnaires were applied to 248 women. The questionnaires were compared with prolapse stage according to the Pelvic Organ Prolapse Quantification (POP-Q) system. The responsiveness of the questionnaires was assessed in 103 women with prolapse who also completed the questionnaires after reconstructive surgical treatment, with standardized response mean (SRM), effect size (ES), and the Wilcoxon signed-rank test.
Cronbach alpha coefficients of the Turkish PFDI-20 and PFIQ-7 questionnaires were 0.908 and 0.830, respectively. Significant correlations were observed between the scores of the questionnaires with the vaginal examination findings. The PFDI-20 and PFIQ-7 scores were significantly improved after vaginal reconstructive surgery.
Turkish translated versions of the PFDI-20 and PFIQ-7 are reliable, valid and responsive instruments for assessing symptom severity, impact on QoL in women with pelvic organ prolapse. They can be easily administered and self-completed by Turkish women.

View all citing articles on Scopus

View full text

Outcome assessmentSymptom severity and QOL scales for urinary incontinence

Abstract

Section snippets

Relationships between questionnaires and clinical measures

Recommended questionnaires

Conclusion

J Urol

J Chronic Dis

Pain

J Urol

J Urol

J Urol

Obstet Gynecol

Urology

J Clin Epidemiol

Am J Obstet Gynecol

Health Policy

Urology

J Urol

Int J Radiat Oncol Biol Phys

Urology

J Urol

New look at bladder neck obstruction by the Food and Drug Administration regulators

Am Assoc Genitourinary Surg

Who should measure quality of life, the doctor or the patient?

Cancer

Karnofsky performance status revisitedreliability, validity and guidelines

J Clin Oncol

Quality of life in chronic diseasesperceptions of elderly patients

J Gerontol

The urinary diary in evaluation of incontinent womena test-retest analysis

Obstet Gynecol

Frequency volume chart

Relationships between lower urinary tract symptoms and bladder outlet obstructionresults from the ICS-BPH study

Neurourol Urodyn

Reliability of the International Prostate Symptom Score in the assessment of patients with lower urinary tract symptoms and/or benign prostatic hyperplasia

J Urol

The ICS-“BPH” studyuroflowmetry, lower urinary tract symptoms and bladder outlet obstruction

Br J Urol

The effects of urinary incontinence in women

Int Rehabil Med

The quality of life in women with urinary incontinence as measured by the sickness impact profile

J Am Geriatr Soc

Short forms to assess life quality and symptom distress for urinary incontinence in womenthe Incontinence Impact Questionnaire and the Urogenital Distress Inventory

Neurourol Urodyn

Psychosocial impact of urinary incontinence in women

Obstet Gynecol

Symptom and quality of life assessment

Symptom and quality of life assessment

Health-related quality of life measures for women with urinary incontinencethe Incontinence Impact Questionnaire and the Urogenital Distress Inventory

Qual Life Res

A health related quality of life measure for use in patients with urge urinary incontinencea validation study

Qual Life Res

A new questionnaire to assess the quality of life of urinary incontinent women

Br J Obstet Gynaecol

Validation of a severity index in female urinary incontinence and its implementation in an epidemiological survey

J Epidemiol Community Health

A patient weighted symptom score system in the evaluation of uncomplicated benign prostatic hyperplasia

Scand J Urol Nephrol Suppl

The ICS-“BPH” Studythe psychometric validity and reliability of the ICSmale questionnaire

Br J Urol

The Bristol Female Lower Urinary Tract Symptoms questionnairedevelopment and psychometric testing

Br J Urol

Development of a symptom severity index and a symptom impact index for stress incontinence in women

Neurourol Urodyn

Outcome assessment
Symptom severity and QOL scales for urinary incontinence