Incontinence questionnaire

This questionnaire, promoted by the WFIP (World Federation of Incontinence Patients), is aimed exclusively at people who suffer from some sort of incontinence. Its purpose is to better understand their experiences and how incontinence influences their everyday life in order to offer future services to our community of people affected by this problem.

Disclaimer: This survey is strictly confidential and anonymous. No personal data will be compiled from the individuals surveyed and the responses will only be used to obtain global results.

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* 1. Please indicate whether you are a:

Male

Female

Prefer not to say

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* 2. Please indicate your current age:

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* 3. Select your country of residence:

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* 4. In general, would you say your state of health is:

Very Good

Good

Average

Poor

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* 5. What type of incontinence do you have?

Urinary incontinence

Faecal incontinence

Mixed incontinence

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* 6. When did the symptoms start?

After giving birth

After menopause

After several infections

When I was diagnosed with a prostate problem

Due to a neurological disease (e.g. multiple sclerosis, Parkinson’s disease, Alzheimer's disease, cerebral palsy, stroke, head injury …)

Diabetes

Other causes (please specify)

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* 7. Which healthcare professional did you speak to first about your incontinence?

Gynaecologist or obstetrician

Urologist

Gastroenterologist

General or gastrointestinal surgeon

Physiotherapist

Psychologist

Nurse

Pharmacist

Other (please specify)

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* 8. How many professionals did you see before receiving a diagnosis?

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* 9. Finally, who diagnosed the incontinence and indicated treatment?

Gynaecologist or obstetrician

Urologist

Gastroenterologist

General or gastrointestinal surgeon

Physiotherapist

Psychologist

Nurse

Pharmacist

Other (please specify)

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* 10. Who is currently following the course of your incontinence? (multiple responses can be chosen)

Gynaecologist or obstetrician

Urologist

Gastroenterologist

General or gastrointestinal surgeon

Physiotherapist

Psychologist

Nurse

Pharmacist

Other (please specify)

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* 11. What was your main problem in obtaining a correct diagnosis and starting treatment?

I didn’t have any major difficulty, as I visited my doctor when the symptoms started and he/she prescribed my treatment

When I consulted my doctor, he/she didn’t think my symptoms were important, so it was months before I started receiving treatment

I found it very difficult to talk about my problem with the doctor, because I was embarrassed and this delayed my diagnosis and treatment

I thought my problem was normal and there was no cure, so it was a long time before I visited the doctor about it

I was told it was part of aging and told to live with it

Other (please specify)

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* 12. Have you had problems in receiving diagnosis and treatment for your incontinence for any of the following reasons? (multiple responses can be chosen)

Because of my ethnic origin

Because of my religious beliefs

Because of prejudice in my social environment

Because of my economic situation

None

Other (please specify)

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* 13. Please indicate below how incontinence affects your everyday life in general:

	Strongly disagree	Disagree	Neither agree nor disagree	Agree	Strongly agree
I feel my health is poor due to incontinence	I feel my health is poor due to incontinence Strongly disagree	I feel my health is poor due to incontinence Disagree	I feel my health is poor due to incontinence Neither agree nor disagree	I feel my health is poor due to incontinence Agree	I feel my health is poor due to incontinence Strongly agree
I’m embarrassed about having this condition	I’m embarrassed about having this condition Strongly disagree	I’m embarrassed about having this condition Disagree	I’m embarrassed about having this condition Neither agree nor disagree	I’m embarrassed about having this condition Agree	I’m embarrassed about having this condition Strongly agree
I feel more socially isolated (friends, family)	I feel more socially isolated (friends, family) Strongly disagree	I feel more socially isolated (friends, family) Disagree	I feel more socially isolated (friends, family) Neither agree nor disagree	I feel more socially isolated (friends, family) Agree	I feel more socially isolated (friends, family) Strongly agree
I feel poorly understood by others	I feel poorly understood by others Strongly disagree	I feel poorly understood by others Disagree	I feel poorly understood by others Neither agree nor disagree	I feel poorly understood by others Agree	I feel poorly understood by others Strongly agree
I’ve lost my self-confidence	I’ve lost my self-confidence Strongly disagree	I’ve lost my self-confidence Disagree	I’ve lost my self-confidence Neither agree nor disagree	I’ve lost my self-confidence Agree	I’ve lost my self-confidence Strongly agree
I worry in case I smell	I worry in case I smell Strongly disagree	I worry in case I smell Disagree	I worry in case I smell Neither agree nor disagree	I worry in case I smell Agree	I worry in case I smell Strongly agree
I’m worried that incontinence impacts on my sexual relationship	I’m worried that incontinence impacts on my sexual relationship Strongly disagree	I’m worried that incontinence impacts on my sexual relationship Disagree	I’m worried that incontinence impacts on my sexual relationship Neither agree nor disagree	I’m worried that incontinence impacts on my sexual relationship Agree	I’m worried that incontinence impacts on my sexual relationship Strongly agree
Generally, I feel incontinence impacts adversely on my quality of life	Generally, I feel incontinence impacts adversely on my quality of life Strongly disagree	Generally, I feel incontinence impacts adversely on my quality of life Disagree	Generally, I feel incontinence impacts adversely on my quality of life Neither agree nor disagree	Generally, I feel incontinence impacts adversely on my quality of life Agree	Generally, I feel incontinence impacts adversely on my quality of life Strongly agree

Other (please specify)

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* 14. Please indicate below how incontinence affects your daily activities:

	Strongly disagree	Disagree	Neither agree nor disagree	Agree	Strongly agree
I’ve managed to prevent incontinence from limiting my daily activities	I’ve managed to prevent incontinence from limiting my daily activities Strongly disagree	I’ve managed to prevent incontinence from limiting my daily activities Disagree	I’ve managed to prevent incontinence from limiting my daily activities Neither agree nor disagree	I’ve managed to prevent incontinence from limiting my daily activities Agree	I’ve managed to prevent incontinence from limiting my daily activities Strongly agree
I’m always worried that I will leak	I’m always worried that I will leak Strongly disagree	I’m always worried that I will leak Disagree	I’m always worried that I will leak Neither agree nor disagree	I’m always worried that I will leak Agree	I’m always worried that I will leak Strongly agree
I often feel down or even depressed	I often feel down or even depressed Strongly disagree	I often feel down or even depressed Disagree	I often feel down or even depressed Neither agree nor disagree	I often feel down or even depressed Agree	I often feel down or even depressed Strongly agree
Incontinence limits the variety of what I can wear	Incontinence limits the variety of what I can wear Strongly disagree	Incontinence limits the variety of what I can wear Disagree	Incontinence limits the variety of what I can wear Neither agree nor disagree	Incontinence limits the variety of what I can wear Agree	Incontinence limits the variety of what I can wear Strongly agree
Incontinence limits my sporting activities and physical exercise	Incontinence limits my sporting activities and physical exercise Strongly disagree	Incontinence limits my sporting activities and physical exercise Disagree	Incontinence limits my sporting activities and physical exercise Neither agree nor disagree	Incontinence limits my sporting activities and physical exercise Agree	Incontinence limits my sporting activities and physical exercise Strongly agree
I avoid long journeys on public transport	I avoid long journeys on public transport Strongly disagree	I avoid long journeys on public transport Disagree	I avoid long journeys on public transport Neither agree nor disagree	I avoid long journeys on public transport Agree	I avoid long journeys on public transport Strongly agree
I avoid going out socially	I avoid going out socially Strongly disagree	I avoid going out socially Disagree	I avoid going out socially Neither agree nor disagree	I avoid going out socially Agree	I avoid going out socially Strongly agree
I watch how much I drink or eat before leaving home	I watch how much I drink or eat before leaving home Strongly disagree	I watch how much I drink or eat before leaving home Disagree	I watch how much I drink or eat before leaving home Neither agree nor disagree	I watch how much I drink or eat before leaving home Agree	I watch how much I drink or eat before leaving home Strongly agree
Incontinence has impacted on my sex life	Incontinence has impacted on my sex life Strongly disagree	Incontinence has impacted on my sex life Disagree	Incontinence has impacted on my sex life Neither agree nor disagree	Incontinence has impacted on my sex life Agree	Incontinence has impacted on my sex life Strongly agree

Other (please specify)

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* 15. Please indicate below how incontinence affects your work:

	Strongly disagree	Disagree	Neither agree nor disagree	Agree	Strongly agree
It doesn’t affect my work	It doesn’t affect my work Strongly disagree	It doesn’t affect my work Disagree	It doesn’t affect my work Neither agree nor disagree	It doesn’t affect my work Agree	It doesn’t affect my work Strongly agree
I socialize less at work	I socialize less at work Strongly disagree	I socialize less at work Disagree	I socialize less at work Neither agree nor disagree	I socialize less at work Agree	I socialize less at work Strongly agree
My work performance is negatively affected due to lack of sleep	My work performance is negatively affected due to lack of sleep Strongly disagree	My work performance is negatively affected due to lack of sleep Disagree	My work performance is negatively affected due to lack of sleep Neither agree nor disagree	My work performance is negatively affected due to lack of sleep Agree	My work performance is negatively affected due to lack of sleep Strongly agree
I take time off work for fear of leakage	I take time off work for fear of leakage Strongly disagree	I take time off work for fear of leakage Disagree	I take time off work for fear of leakage Neither agree nor disagree	I take time off work for fear of leakage Agree	I take time off work for fear of leakage Strongly agree
I’m on temporary sick leave due to incontinence	I’m on temporary sick leave due to incontinence Strongly disagree	I’m on temporary sick leave due to incontinence Disagree	I’m on temporary sick leave due to incontinence Neither agree nor disagree	I’m on temporary sick leave due to incontinence Agree	I’m on temporary sick leave due to incontinence Strongly agree
I left my regular job due to incontinence	I left my regular job due to incontinence Strongly disagree	I left my regular job due to incontinence Disagree	I left my regular job due to incontinence Neither agree nor disagree	I left my regular job due to incontinence Agree	I left my regular job due to incontinence Strongly agree

Other (please specify)

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* 16. How would you rate the information that you receive about incontinence from different sources (e.g. clinicians, nurses, Google, social media, …)?

It is sufficient and useful

It is poor

It is not sufficiently useful

I consider sources other than my doctor not reliable

I don’t regularly receive or look for information about incontinence

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* 17. Please indicate what sources you use to keep up to date on topics related to health and particularly incontinence: (multiple responses can be chosen)

General health websites and/or blogs

Patient associations’ websites and/or blogs

Scientific websites and/or blogs

Social media in general (e.g. Facebook, Twitter, Instagram)

Patient associations’ social media (e.g. Facebook, Twitter, Instagram)

Scientific social media (e.g. Facebook, Twitter, Instagram)

Radio programmes

TV programmes

Magazines or newspapers

None

Other (please specify)

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* 18. Indicate which of the following actions would help you in your everyday life, besides your treatment

	Strongly disagree	Disagree	Neither agree nor disagree	Agree	Strongly agree
Being able to share my problem with others	Being able to share my problem with others Strongly disagree	Being able to share my problem with others Disagree	Being able to share my problem with others Neither agree nor disagree	Being able to share my problem with others Agree	Being able to share my problem with others Strongly agree
Having “aids” to help me manage accidents	Having “aids” to help me manage accidents Strongly disagree	Having “aids” to help me manage accidents Disagree	Having “aids” to help me manage accidents Neither agree nor disagree	Having “aids” to help me manage accidents Agree	Having “aids” to help me manage accidents Strongly agree
Having easy access to experts to answer my questions	Having easy access to experts to answer my questions Strongly disagree	Having easy access to experts to answer my questions Disagree	Having easy access to experts to answer my questions Neither agree nor disagree	Having easy access to experts to answer my questions Agree	Having easy access to experts to answer my questions Strongly agree
Having accessible psychological support when I need it	Having accessible psychological support when I need it Strongly disagree	Having accessible psychological support when I need it Disagree	Having accessible psychological support when I need it Neither agree nor disagree	Having accessible psychological support when I need it Agree	Having accessible psychological support when I need it Strongly agree
Being up to date with the latest advances in treatment options	Being up to date with the latest advances in treatment options Strongly disagree	Being up to date with the latest advances in treatment options Disagree	Being up to date with the latest advances in treatment options Neither agree nor disagree	Being up to date with the latest advances in treatment options Agree	Being up to date with the latest advances in treatment options Strongly agree
If my family and friends had more information and training to have a better understanding of my situation	If my family and friends had more information and training to have a better understanding of my situation Strongly disagree	If my family and friends had more information and training to have a better understanding of my situation Disagree	If my family and friends had more information and training to have a better understanding of my situation Neither agree nor disagree	If my family and friends had more information and training to have a better understanding of my situation Agree	If my family and friends had more information and training to have a better understanding of my situation Strongly agree
Get adequate information from my doctor to enable me to handle my situation	Get adequate information from my doctor to enable me to handle my situation Strongly disagree	Get adequate information from my doctor to enable me to handle my situation Disagree	Get adequate information from my doctor to enable me to handle my situation Neither agree nor disagree	Get adequate information from my doctor to enable me to handle my situation Agree	Get adequate information from my doctor to enable me to handle my situation Strongly agree

Other (please specify)

Thank you for your answers and for helping improve quality of life for all.