Taboo Perception of Incontinence, Depression and Cancer

The Greatest Taboo- Urinary Incontinence, Depression and Cancer

Objective/study hypothesis To evaluate how much of a taboo UI is and how it compares to other medical conditions that may also pose a taboo issue like depression and cancer.

Background Urinary incontinence (UI) is a highly prevalent condition with more than 200 million people worldwide being affected. While physical health does not necessarily have to be impaired much, restriction of social activities leads to isolation, a significant reduction in quality of life and will often bring about subsequent morbidity. Despite its prevalence, many patients suffering from UI go undiagnosed and untreated. Patients often hesitate to report the problem, and health care professionals often do not ask about it. In a study Minassian (2003) estimated that just one in four patients actively seeks medical attention. The reason for this may lie in the shame, embarrassment, and stigma associated with this condition, which in turn pose significant barriers to seeking professional treatment. Although mentioned by many narrative reviews and included in some epidemiological papers on UI, surprisingly we found no data addressing the taboo of UI exclusively. The aim of our study therefore was

Methods/Design A 13-question self-administered questionnaire was developed and face validity tested by 2 of the authors (KH, EH). The anonymous questionnaire contained simple questions on gender and age and then asked yes/no questions on whether test persons knew people with UI, or suspected other people to be incontinent, if they would address this issue with the suspected person, and if they thought that UI was a taboo issue in the society. On a scale from 0 - 10 they were then asked to grade the amount of embarrassment and anxiety if they themselves were incontinent, compared to depression or cancer. A few questions on knowledge of the condition of UI and to whom test persons would turn to in case of UI concluded the short questionnaire, which took about 5 minutes to fill in. A convenience sample of 150 test persons from waiting areas of a teaching hospital and in private practices of general practitioners in Austria agreed to take part in the study, with an additional 10 persons (6.2%) declining after being informed about the subject. Data were analysed with the SPSS 10.0.5 software package using the U-test, Chi-square-test, Yates-correction, Fisher's exact test and Kolmogorov-Smirnov normality test where appropriate.

Study Overview

• Status: Completed
• Conditions: Gender Differences; Urinary Incontinence Awareness

• Study Type: Observational
• Enrollment (Actual): 150

Contacts and Locations

Study Locations

• Austria
  • Vienna, Austria, 1090
    • Medical University of Vienna Austria

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

A convenience sample of 150 test persons from waiting areas of a teaching hospital and in private practices of general practitioners in Austria agreed to take part in the study, with an additional 10 persons (6.2%) declining after being informed about the subject.

Description

Inclusion Criteria:

- Subjects older than 18 years willing to take part in study mentally capable to understand and fill in anonymous questionnaire

Exclusion Criteria:

- incomplete questionnaire

Study Plan

How is the study designed?

Design Details

• Observational Models: Ecologic or Community
• Time Perspectives: Cross-Sectional

Number of groups / cohorts

3

Cohorts and Interventions

Group / Cohort
Gender; male/female
Age; 18-100 years
Educational level; primary school, secondary school, university

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Time Frame
Perception of given medical condition as a taboo issue	single point in time

Secondary Outcome Measures

Outcome Measure	Time Frame
Knowledge of treatment options of incontinence	single point in time
Knowledge of friends or relatives with incontinence	single point in time

Collaborators and Investigators

• Sponsor: Medical University of Vienna

Study record dates

Study Major Dates

• Study Start: November 1, 2005
• Primary Completion (Actual): April 1, 2006
• Study Completion (Actual): April 1, 2007

Study Registration Dates

• First Submitted: July 14, 2009
• First Submitted That Met QC Criteria: July 14, 2009
• First Posted (Estimate): July 15, 2009

Study Record Updates

• Last Update Posted (Estimate): July 15, 2009
• Last Update Submitted That Met QC Criteria: July 14, 2009
• Last Verified: July 1, 2009

More Information

Terms related to this study

• Keywords: treatment; cancer; depression; incontinence; urinary; shame; taboo; embarrassment
• Additional Relevant MeSH Terms: Behavioral Symptoms; Mental Disorders; Urologic Diseases; Lower Urinary Tract Symptoms; Urological Manifestations; Urination Disorders; Elimination Disorders; Depression; Urinary Incontinence; Enuresis
• Other Study ID Numbers: EK 453/2008