Incontinence Quality of Life Scale

Link to instrument: Link to Instrument

Acronym:

I-QOL

Purpose:

The I-QOL is a conditions-specific, 22-item self-report measure of Quality of Life (QOL) designed to assess the health-related QOL impact of urinary incontinence.

Description:

• The I-QOL is a 22 item measure that is divided into three domains:
  • 8-item domain assessing the physical impact of urinary incontinence (Avoidance and Limiting Behaviors Domain)
  • 9-item domain assessing psychological impact (Psychosocial Impact Domain)
  • 5-item domain assessing social impact (Social Embarrassment Domain)
• Scores are calculated for each domain, and a total summary score can be calculated from all 22 items.

Area of Assessment: Activities of Daily Living, Incontinence, Quality of Life

Body Part: Not Applicable

ICF Domain: Body Function

Domain: ADL, General Health

Assessment Type: Patient Reported Outcomes

Length of Test: 05 Minutes or Less

Time to Administer:

5 minutes

Number of Items: 22

Equipment Required:

Pen/Pencil and Response Form

Training Required:

No Training Required

Type of training required: No Training

Cost: Not Free

Actual Cost:

Instruction Manual: $500.00 USD for private/for-profit users; $200.00 USD for public/academic/non-profit institutions; free for students.

Age Range: Adult: 18-64 years, Elderly adult: 65+

Administration Mode: Paper/Pencil

Diagnosis: Multiple Sclerosis

Populations Tested:

• Multiple Sclerosis
• Urinary Incontinence (e.g., stress, urge, & mixed)
• Overactive Bladder (OAB)
• Neurogenic Detrusor Over Activity

Standard Error of Measurement (SEM):

Multiple Sclerosis (Eyigor et al., 2010) (Calculated using ICC and baseline standard deviations)   ·         Avoidance & Limiting Behaviors: SEM= 3.07 ·         Psychosocial Impacts: SEM= 3.46 ·         Social Embarrassment: SEM= 1.89 ·         Total Score: SEM= 2.43

Minimal Detectable Change (MDC):

Multiple Sclerosis (Eyigor et al., 2010) (Calculated using ICC, baseline standard deviations, and SEM)   ·         Avoidance & Limiting Behaviors: MDC (95%)= 8.52 ·         Psychosocial Impacts: MDC (95%)= 9.61 ·         Social Embarrassment: MDC (95%)= 5.26 ·         Total Score: MDC (95%)= 6.75

Minimally Clinically Important Difference (MCID):

Neurogenic Detrusor Over Activity (Schurch et al., 2007)

 

·         Improvements between 4 and 11 points on the IQOL represent a minimally important difference for patients.

 

Overactive Bladder (OAB) (Patrick et al., 2013)

 

·         A > 50% reduction in urinary incontinence episodes, the lowest improvement threshold, corresponded with a mean improvement of 11.2 point.

 

·         A 100% reduction in urinary incontinence episodes corresponded with an improvement of 40.2 and 50.3 points on the Psychosocial Impacts and Social Embarrassment scales, respectively.

Cut-Off Scores:

Not Established

Normative Data:

Multiple Sclerosis (Eyigor et al., 2010)

(n= 37 patients diagnosed with Multiple Sclerosis; Mean Age= 29.16 (SD= 11.65); Female= 30%)

 

·         Avoidance & Limiting Behaviors Score: Mean (SD)= 26.92 (8.87)

·         Psychosocial Impacts Score: Mean (SD)= 33.35 (10.45)

·         Social Embarrassment Score: Mean (SD)= 18.70 (6.00)

·         Total Score: Mean (SD)= 26.32 (8.12)

 

Neurogenic Detrusor Over Activity (Hollingworth et al., 2010) (n= 59 patients with urinary incontinence due to neurogenic Detrusor Over Activity following SCI or MS; Mean Age (SD)= 41.2 (13.3); White= 93.2; Male= 61.0%)

 

·         Avoidance & Limiting Behaviors: Mean (SD)= 48.7 (23.1)

·         Psychosocial Impacts Score: Mean (SD)= 45.2 (23.8)

·         Social Embarrassment Score: Mean (SD)= 33.0 (24.0)

·         Total Score: Mean (SD)= 43.7 (20.8)

 

Urinary Incontinence (Bushnell et al., 2005; n=851)

 

(**Note: Busnell et al., 2005 tested 15 different language versions of the I-QOL. Full normative data for each language version and study can be found in original paper. The statistics below are for the English version of the I-QOL in the US.)

 

Mean total summary scores are provided for three levels of perceived, self-reported severity (e.g., Mild, Moderate, & Severe.

 

·         Mild Incontinence (n= 349): Mean (SD)= 70.1 (15.7)

·         Moderate Incontinence (n= 424): Mean (SD)= 58.3 (16.3)

·         Severe Incontinence (n= 75): Mean (SD)= 35.2 (15.8)

 

(Ozkan, S. Ogce, F., & Cakir, D., 2011)

 

Slight Incontinence (n= 61)

 

·         Avoidance & Limiting Behaviors: Mean (SD)= 8.23 (2.50)

·         Psychosocial Impacts Score: Mean (SD)= 8.46 (2.15)

·         Social Embarrassment Score: Mean (SD)= (1.02)

·         Total Score: Mean (SD)= 71.44 (19.72)

 

Moderate Incontinence (n= 47)

 

·         Avoidance & Limiting Behaviors: Mean (SD)= 7.93 (2.85)

·         Psychosocial Impacts Score: Mean (SD)= 8.01 (2.53)

·         Social Embarrassment Score: Mean (SD)= 8.94 (1.30)

·         Total Score: Mean (SD)= 67.98 (22.89)

 

Severe Incontinence (n= 14)

 

·         Avoidance & Limiting Behaviors: Mean (SD)= 8.83 (1.84)

·         Psychosocial Impacts Score: Mean (SD)= 9.04 (1.81)

·         Social Embarrassment Score: Mean (SD)= 7.15 (1.91)

·         Total Score: Mean (SD)= 76.55 (15.67)

 

Urinary Incontinence in Korean Speaking Korean-American Women(Kang, Phillips, & Kim, 2010; Korean Translation Instrument)

(n= 149 Korean-American women)

 

Ages 30-39

 

·         Avoidance & Limiting Behaviors: Mean (SD)= 83.00 (17.12)

·         Psychosocial Impacts Score: Mean (SD)= 88.12 (17.04)

·         Social Embarrassment Score: Mean (SD)= 79.44 (24.00)

·         Total Score: Mean (SD)= 84.28 (17.49)

 

Ages 40-49

·         Avoidance & Limiting Behaviors: Mean (SD)= 83.04 (17.92)

·         Psychosocial Impacts Score: Mean (SD)= 89.40 (16.27)

·         Social Embarrassment Score: Mean (SD)= 85.82 (17.27)

·         Total Score: Mean (SD)= 86.27 (16.24)

Ages 50-59

 

·         Avoidance & Limiting Behaviors: Mean (SD)= 77.34 (23.86)

·         Psychosocial Impacts Score: Mean (SD)= 86.00 (19.14)

·         Social Embarrassment Score: Mean (SD)= 80.42 (22.00)

·         Total Score: Mean (SD)= 81.58 (20.48)

 

Age 60+

 

·         Avoidance & Limiting Behaviors: Mean (SD)=77.21 (17.57)

·         Psychosocial Impacts Score: Mean (SD)= 88.32 (15.80)

·         Social Embarrassment Score: Mean (SD)= 80.74 (19.43)

·         Total Score: Mean (SD)= 82.55 (15.66)

 

Total Sample (n=149)

 

·         Avoidance & Limiting Behaviors: Mean (SD)= 79.87 (19.89)

·         Psychosocial Impacts Score: Mean (SD)= 87.90 (17.12)

·         Social Embarrassment Score: Mean (SD)= 82.15 (20.19)

·         Total Score: Mean (SD)= 83.67 (17.68)

Test-retest Reliability:

Multiple Sclerosis (Eyigor et al., 2010)

 

·         Avoidance & Limiting Behaviors: Excellent (ICC= 0.88)

·         Psychosocial Impacts: Excellent (ICC= 0.89)

·         Social Embarrassment: Excellent (ICC= 0.90)

·         Total Score: Excellent (ICC= 0.91)

 

Urinary Incontinence (Bushnell et al., 2005)

 

(**Note: Busnell et al., 2005 tested 15 different language versions of the I-QOL. All ICCs were adequate to excellent, falling above .70. The statistics below are for the English version of the I-QOL in the US.)

 

·         Avoidance & Limiting Behaviors: Excellent (ICC= 0.93)

·         Psychosocial Impacts: Excellent (ICC= 0.89)

·         Social Embarrassment: Excellent (ICC= 0.88)

·         Total Score: Excellent (ICC= 0.94)

 

Overactive Bladder/Urinary Incontinence (Patrick et al., 2013)

 

·         Avoidance & Limiting Behaviors: Adequate (ICC= 0.68)

·         Psychosocial Impacts: Excellent (ICC= 0.84)

·         Social Embarrassment: Adequate (ICC= 0.79)

·         Total Score: Excellent (ICC= 0.81)

Interrater/Intrarater Reliability:

Not Established

Internal Consistency:

Multiple Sclerosis (Eyigor et al., 2010)

 

·         Avoidance & Limiting Behaviors: Excellent (Cronbach's Alpha= 0.88)

·         Psychosocial Impacts: Excellent (Cronbach's Alpha= 0.88)

·         Social Embarrassment: Excellent (Cronbach's Alpha= 0.90)

·         Total Score: Excellent (Cronbach's Alpha= 0.91)

 

Urinary Incontinence (Bushnell et al., 2005)

 

(**Note: Bushnell et al., 2005 tested 15 different language versions of the I-QOL. All Cronbach's Alphas were adequate to excellent, falling above .72. The statistics below are for the English version of the I-QOL in the US.)

 

·         Avoidance & Limiting Behaviors: Excellent (Cronbach's Alpha= 0.84)

·         Psychosocial Impacts: Excellent (Cronbach's Alpha= 0.90)

·         Social Embarrassment: Excellent (Cronbach's Alpha= 0.86)

·         Total Score: Excellent (Cronbach's Alpha= 0.94)

 

Urinary Incontinence in Korean Speaking Korean-American Women (Kang, Phillips, & Kim, 2010; Korean Translation Instrument)

 

·         Avoidance & Limiting Behaviors: Excellent (Cronbach's Alpha= 0.87)

·         Psychosocial Impacts: Excellent (Cronbach's Alpha= 0.93)

·         Social Embarrassment: Excellent (Cronbach's Alpha= 0.86)

·         Total Score: Excellent (Cronbach's Alpha= 0.96)

 

Overactive Bladder/Urinary Incontinence (Patrick et al., 2013)

 

·         Avoidance & Limiting Behaviors: Excellent (Cronbach's Alpha= 0.93)

·         Psychosocial Impacts: Excellent (Cronbach's Alpha= 0.91)

·         Social Embarrassment: Excellent (Cronbach's Alpha= 0.92)

·         Total Score: Excellent (Cronbach's Alpha= 0.86)

Criterion Validity (Predictive/Concurrent):

Neurogenic Detrusor Over Activity (Schurch et al., 2007)

 

Correlations with SF-36 at Screening
SF-36 Domains	ALB	PSI	SE	Total
Physical Function	-.07	-.03	.02	-.04
Role-Physical	.15	.36*	.26	.30*
Bodily Pain	.25	.14	.12	.20
General Health	.10	.20	.04	.14
Vitality	-.04	.09	.02	.04
Social Functioning	.27*	.44*	.27*	.38*
Role-Emotional	.29*	.38*	.32*	.38*
Mental Health	.20	.31*	.24	.29*
PCS	.13	.11	.07	.12
MCS	.22	.39*	.29*	.34*
*= p< .05; ALB= Avoidance & Limiting Behavior; PSI= Psychosocial Impacts; SE= Social Embarrassment

Correlations with SF-36 at Screening
SF-36 Domains	ALB	PSI	SE	Total
Physical Function	-.07	-.03	.02	-.04
Role-Physical	.15	.36*	.26	.30*
Bodily Pain	.25	.14	.12	.20
General Health	.10	.20	.04	.14
Vitality	-.04	.09	.02	.04
Social Functioning	.27*	.44*	.27*	.38*
Role-Emotional	.29*	.38*	.32*	.38*
Mental Health	.20	.31*	.24	.29*
PCS	.13	.11	.07	.12
MCS	.22	.39*	.29*	.34*
*= p< .05; ALB= Avoidance & Limiting Behavior; PSI= Psychosocial Impacts; SE= Social Embarrassment

Correlations with Multiple Sclerosis Quality of Life Scale
MQOL-54	ALB	PSI	SE	Total
Physical Health	0.55*	0.59*	0.53*	0.58*
Mental Health	0.34**	0.33**	0.40**	0.38**
*= p< .05; **= p< .001; ALB= Avoidance & Limiting Behavior; PSI= Psychosocial Impacts; SE= Social Embarrassment

Correlations with Multiple Sclerosis Quality of Life Scale
MQOL-54	ALB	PSI	SE	Total
Physical Health	0.55*	0.59*	0.53*	0.58*
Mental Health	0.34**	0.33**	0.40**	0.38**
*= p< .05; **= p< .001; ALB= Avoidance & Limiting Behavior; PSI= Psychosocial Impacts; SE= Social Embarrassment

Construct Validity (Convergent/Discriminant):

Urinary Incontinence (Bushnell et al., 2005)

 

Discriminant Validity of the I-QOL Total Summary Score (Self-reported Severity)
		Mild		Moderate		Severe
	Eta-Squareda	Mean (SD)	N	Mean (SD)	N	Mean (SD)	N	F-stat
Clinical Trial Cohort
Australia	0.241	73.9 (15.6)	22	59.0 (19.9)	43	42.0 (15.9)	11	11.6 ***
Belgium	0.442	73.3 (15.2)	16	62.5 (14.8)	27	34.9 (20.3)	13	21.0 ***
Brazil	0.085	66.1 (16.6)	10	55.6 (17.4)	24	50.4 (24.0)	6	1.7
Canada (English)	0.361	73.0 (12.0)	19	56.0 (13.4)	37	42.9 (16.6)	9	17.5 ***
Canada (French)	0.413	66.0 (19.9)	11	60.6 (15.1)	32	27.3 (18.8)	10	17.6 ***
Denmark	0.146	69.7 (20.0)	11	58.1 (18.2)	28	47.8 (14.2)	10	3.9 *
Spain	0.154	67.0 (19.4)	10	51.0 (20.4)	20	45.1 (19.4)	13	3.6 *
UK	0.312	69.1 (12.4)	17	53.1 (16.4)	46	37.1 (9.9)	11	16.1 ***
Netherlands	0.457	81.0 (9.8)	40	69.6 (13.5)	44	45.9 (19.3)	17	41.2 ***
Poland	0.370	65.2 (19.4)	38	48.3 (17.3)	68	28.0 (15.8)	34	40.2 ***
South Africa	0.266	74.3 (16.6)	34	60.5 (16.4)	64	43.9 (17.1)	18	20.5 ***
Sweden	0.293	75.3 (16.0)	37	56.9 (17.2)	73	37.8 (12.9)	8	23.8 ***
USA	0.274	70.1 (15.7)	349	58.3 (16.3)	424	35.2 (15.8)	75	159.4 ***
Non-Clinical Trial Studies
Greece	0.509	89.6 (9.3)	27	68.3 (17.5)	11	52.0 (21.7)	5	20.8 ***
Slovakia	0.251	60.2 (18.9)	18	44.6 (23.7)	22	29.3 (16.8)	12	8.2 **
a Eta squared is measure of association from ANOVA; Note: Discrepancies in numbers are a result of subjects missing self-reported severity data.*** Significant at the 0.001 level; ** Significant at the 0.01 level; * Significant at the 0.05 level.

 

Convergent Validity of the IQL (Slovakia Data)
SF-36 Domain	Total Score	ABL	PSI	SE
Physical Function (PF)	0.48***	0.42**	0.47***	0.51***
Role-Physical (RP)	0.50***	0.44**	0.48***	0.51***
Bodily Pain (BP)	0.34*	0.37**	0.29*	0.34*
General Health Perceptions (GH)	0.06	0.03	0.06	0.08
Vitality (VT)	0.33*	0.28*	0.34*	0.31*
Social Function (SF)	0.57***	0.53***	0.56***	0.53***
Role-Emotional (RE)	0.44**	0.37**	0.41**	0.52***
Mental Health (MH)	0.43**	0.32*	0.51***	0.37**
Legend: n =52. * Correlation is significant at the 0.05 level (2-tailed); ** Correlation is significant at the 0.01 level (2-tailed); *** Correlation is significant at the 0.001 level (2-tailed).

Content Validity:

Urinary Incontinence in Korean Speaking Korean-American Women (Kang, Phillips, & Kim, 2010; Korean Translation Instrument)

 

·         Content validity was established by using English and Korean versions of the tool, with all test subjects being bilingual. The subjects were then interviewed to ascertain any noticeable differences between the two. Minimal differences were noted.

Face Validity:

Not Statistically Assessed

Floor/Ceiling Effects:

Overactive Bladder/Urinary Incontinence (Patrick et al., 2013)

 

·         No marked floor or ceiling effects were observed across I-QOL total summary or subscale scores.

·         Social Embarrassment subscale had the greatest baseline floor effect (Adequate= 14.6%) and ceiling effect (Excellent= 0.3%)

·         Greater ceiling effects noted at 12 week retest: the greatest ceiling effect was seen on the Psychosocial Impact subscale (Adequate= 10.8%), while the greatest floor effect was seen on the social Embarrassment subscale (Adequate= 2.8%).

 

Neurogenic Detrusor Over Activity (Schurch et al., 2007)

 

·         No ceiling effects for any of the domains or for the total I-QOL score.

·         Small floor effects were observed for the Social Embarrassment (Adequate= 8.9%) and Psychosocial Impact (Adequate= 1.8%) subscales.

 

Urinary Incontinence (Bushnell et al., 2005)

·         "Potential floor effects were noted in items 2 (I worry about coughing and sneezing), 18 (I worry about wetting myself), and 12 (I worry about my incontinence getting worse as I grow older)"

·         "Ceiling effects of greater than 50% were noted for two items in all languages surveyed by Bushnell et al. (2005), indicating that more than half of the population is not affected by these issues: items 22 (I worry about having sex) and 13 (Hard getting a good night's sleep)"

Responsiveness:

Urinary Incontinence (Bushnell et al., 2005)

·         Standardized response means (SRM) show changes in the number of incontinent episodes.

·         Important change defined as the percent change in I-QOL score for the improved group using the number of incontinent episodes (>25% and >50%).

·         In all language versions, improvements in I-QOL scores were larger for the groups exhibiting at least a 25% decrease in the number of incontinent episodes over 12 weeks (vs. 0–24% decrease), and at least two fold differences between those with a >50% decrease in episodes(vs. a 0–49% decrease).

·         These improvements were associated with SRM values all greater than 0.50 (indicating moderate to high effect sizes), demonstrating that the I-QOL is able to detect change across the reported language versions.

	IEF % decrease	n	I-QOL Change	SRM*	IEF % decrease	n	I-QOL Change	SRM*
Australia	0–24%	7	6.8	0.52	0–49%	20	5.7	0.43
	≥25%	55	16.3	1.05	≥50%	42	19.7	1.38
Belgium	0–24%	9	2.7	0.26	0–49%	14	6.3	0.5
	≥25%	9	12	0.79	≥50%	34	11.9	0.76
Brazil	0–24%	4	2.8	0.08	0–49%	5	0	0
	≥25%	28	13.9	0.75	≥50%	27	14	0.74
Canada (English)	0–24%	6	15.7	1.45	0–49%	21	9.7	1.18
	≥25%	46	19.2	1.05	≥50%	31	25	1.29
Canada (French)	0–24%	7	6.8	0.63	0–49%	20	8.9	0.75
	≥25%	32	12.8	1.05	≥50%	19	14.8	1.25
Denmark	0–24%	8	1.7	0.15	0–49%	18	9.5	0.53
	≥25%	34	14.1	0.94	≥50%	24	13.5	1.06
Spain	0–24%	5	5.3	0.29	0–49%	14	1.9	0.12
	≥25%	27	9.1	0.81	≥50%	18	8.9	0.5
United Kingdom	0–24%	17	0.4	0.02	0–49%	33	1.6	0.08
	≥25%	47	15.5	0.73	≥50%	31	21.6	1.04
The Netherlands	0–24%	9	3.2	0.43	0–49%	27	5	0.39
	≥25%	67	9.4	0.71	≥50%	49	10.7	0.84
Poland	0–24%	24	4.3	0.24	0–49%	46	2.8	0.13
	≥25%	96	17.8	0.8	≥50%	74	20	0.91
South Africa	0–24%	16	1.5	0.11	0–49%	33	2.1	0.15
	≥25%	93	14.6	0.8	≥50%	76	17.4	0.95
Sweden	0–24%	14	8.4	0.53	0–49%	49	9	0.72
	≥25%	86	12.3	0.98	≥50%	51	14.5	1.1
USA	0–24%	89	9.2	0.66	0–49%	241	8.7	0.6
	≥25%	627	15.2	0.93	≥50%	475	17.3	1.07
* Standardized response mean of those with an improvement.

Considerations:

The I-QOL is available in 15 different language formats; normative data and psychometric properties of each of the 15  different languages versions is available in Bushnell et al., 2005.

Bibliography:

Bushnell, D.M., Martin, M.L. Summer, K.H., Svihra, J., Lionis, C., & Patrick, D. L. (2005). Quality of life of women with urinary incontinence: Cross-cultural performance of 15 language versions of the I-QOL. Quality of Life Research, 14(8), 1901-1913.

 

Eyigor, S., Karapolat, H., Akkoc, Y., Yesil, H., & Ekmekci, O. (2010). Quality of life in patients with multiple sclerosis and urinary disorders: Reliability and validity of Turkish-language version of Incontinence Quality of Life Scale. Journal of Rehabilitation Research & Development, 47(1), 67-72.

 

Hollingworth, W., Campbell, J.D., Kowalski, J., Ravelo, A., Girod, I. Briggs, A., & Sullivan, S.D. (2010). Exploring the impact of changes in neurogenic urinary incontinence frequency and condition-specific quality of life on preference-based outcomes. Quality of Life Research, 19(3), 323-331.

 

Kang, Y., Phillips, L.R., & Kim, S. (2010). Incontinence Quality of Life among Korean-American Women. Urologic Nursing, 30(2), 130-136.

 

Ozkan, S. Ogce, F., & Cakir, D. (2011). Quality of life and sexual satisfaction of women with urinary incontinence. Japan Journal of Nursing Science, 8, 11-19.

 

Patrick D.L., Khalaf, K.M., Dmochowski, R., Kowalski, J.W., & Globe, D.R. (2013). Psychometric performance of the Incontinence Quality-of-Life Questionnaire among patients with overactive bladder and urinary incontinence. Clinical Therapeutics, 35(6), 836-845.

 

Schurch, R., Denys, P., Kozma, C.M., Reese, P.R., Slaton, R., & Barron, R. (2007). Reliability and validity of the Incontinence Quality of Life Questionnaire in patients with neurogenic urinary incontinence. Archives of Physical Medicine & Rehabilitation, 88(5), 646-652.

Year published: 1999

Instrument in PDF Format: Yes

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