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AbScent Network Connecting people with smell disorders

Questionnaire

Share your story to help others and raise public awareness of smell loss. Gathering data and building a profile of the long-term outcomes for your sense of smell – and your wellbeing – can help us to build up a detailed picture of smell loss and how it affects the population. 

 

Informed Consent Statement

INTRODUCTION

In this research survey we will be collecting information about demographic factors and several aspects of your chemosensory (smell and taste) perception/experience. This study is being conducted by researchers at the University of Tennessee, Knoxville and researchers at AbScent, a UK-based charity. We encourage you to follow your intuition and be honest when answering, however we kindly ask that you not omit any questions. Thank you!

 

INFORMATION ABOUT PARTICIPANTS' INVOLVEMENT IN THE STUDY

Before completing the survey, let’s discuss some of the points of interest in our research. The first survey section will ask you questions about demographics [gender, age, height, weight, and nationality]. Next, you will be asked a series of questions in several sections: general, parosmia, fleeting whiffs/smell locks, smell training and quality of life. The general category will inquire broadly about smell and taste issues experienced while the other sections will have more specific questions related to the section name. The average time to complete the survey will be 15 -20 minutes.

 

RISKS

The risks associated with this study are minimal and no more than encountered in everyday life.

BENEFITS

This research will provide future direction for scientific and medical communities in understanding chemosensory (smell and taste) disorders.

COMPENSATION

All participants will have access to aggregated data related to the study, in addition to AbScent membership benefits. If you wish to have access to these benefits but do not wish to complete the survey, please contact the investigator at rpellegr@utk.edu who will assist you.

CONFIDENTIALITY

Your responses will not be linked to any identifiable information. Therefore, after you submit the survey, we cannot remove your responses as we will not know which responses belong to you. Data will be stored securely and will be made available only to persons conducting the experiment. No reference to identifiable information will be made in oral or written reports which could link participants to the study. Your survey records will be kept for 3 years.

 

CONTACT INFORMATION

If you have questions at any time about this study, you may contact the researcher, Bob Pellegrino, at rpellegrt@utk.edu, or (865) 974- 7270. If you have questions about your rights as a participant, you may contact the University of Tennessee IRB Compliance Officer at utkirb@utk.edu or (865) 974-7697.

PARTICIPATION

Your participation is voluntary. You can decline to participate or end your participation at any time with no penalty. If you withdraw from the study before data collection is completed your data will be deleted and you will be redirected to the paid-for membership area. If you decide to not to participate or withdraw from the study before completion, this will not affect your relationship with AbScent nor the ability to receive services from them in the future.

CONSENT

I have read this form, been given the chance to ask questions and have my questions answered. If I have more questions, I have been told who to contact. By clicking the “I Agree” button below, I am agreeing to be in this study. I can print or save a copy of this consent information for future reference. If I do not want to be in this study, I can close my internet browser.

 

I Agree

 

 

Sorry!, It looks like you can't use the survey to activate your membership, however you can still support the Sense of Smell Project by joining The AbScent Network.

Demographic Information
General

Do you experience a problem with the sense of smell or taste?

What does the problem relate to?

Can you taste the difference between salt and sugar?

When was the onset of your smell/taste problem?

How did the problem start?

How has your problem changed since it started?

In your opinion, what might have been the cause?

Do you have polyps?

Do you have an aspirin intolerance?

Have you had surgery to your nose?

Have you had surgery to your head?

Did your smell loss occur at this time?

Do you have any of these symptoms?

Does the smell problem come and go, or is it always present?

Can you breathe clearly through your nose?

Do you have sleep apnea?

Do you use a Continuous Positive Airway Pressure (CPAP) machine?

Have you seen a doctor for your condition?

Have you seen a specialist, such as an Ear, Nose and Throat (ENT) doctor or neurologist, for your condition?

Smoking History

Do you smoke?

Parosmia - the experience of distorted smells which have an obvious source

Do you have parosmia (distorted sense of smell)?

How often do you experience parosmia (distorted sense of smell)?

How long does the parosmia linger?

How would you describe your parosmia?

Would you say that parosmia affects your quality of life significantly?

Have you lost weight because of parosmia?

How do you experience your parosmia?

Is the taste of your food different than you expect?

Are odours which are pleasant to others unpleasant to you?

Do bathroom smells (fecal odours) smell differently now than before the start of your smell problem?

Phantosmia - the experience of smells that have no obvious origin

Do you experience smells that are not present (phantosmia)?

How often do you experience smells that are not present?

How would you describe your phantosmia?

Have you noticed anything that triggers phantosmia?

How long does a phantosmia episode last?

Fleeting Whiffs - the instantaneous experience of smell which then disappears

Do you experience fleeting whiffs of smell?

How often do you experience fleeting whiffs of smell?

How would you describe your fleeting whiffs?

When you experience a fleeting whiff, is there is a smell present that others can smell?

When you have a fleeting whiff of smell, is it “true” - not distorted?

Smell locks - the experience of smells that don't go away

Do you sometimes get a smell in your nose that persists, sometimes for an extended period of time?

How often do you experience smell locks?

Are the smell lock triggers all similar, i.e., fruity, 'chemically' etc.?

Smell training

Are you smell training?

Do/Did you find smell training easy or difficult to understand?

If you tried smell training in the past and stopped, what was the reason?

If you have not tried smell training, what is the reason?

Quality of life

How often are you aware of your smell problem?

Has your weight changed since you lost your sense of smell?

If you have had a weight change since the onset of your smell problem, is it due to the smell problem?

If your weight change is related to your smell loss, what about the smell loss is causing the change?

What other changes have you noticed since losing your sense of smell?

How do you manage your smell disorder:

Have you been able to adjust to your smell disorder?

Do you think smell loss has led to a loss in your quality of life?

Danger

Are there situations that you concerned about not detecting? (Check all that apply)

Intimacy

Smell can be a large part of intimacy. Have your intimate relations changed since your smell loss?

Future surveys
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