Cystic Fibrosis Patient Questionnaire

Background Information

I am a graduate student under the direction of Dr. Carol Johnston in the College of Health Solutions at Arizona State University (ASU) in Phoenix Arizona. I am conducting a research study in women with cystic fibrosis to explore body image perceptions in relation to other personal characteristics.

To complete the survey, you must be 18 years of age or older and confirm diagnosis of cystic fibrosis (any genotype). We will also screen for current or past psychotic or bipolar disorders, current or past drug abuse, and acute illness.

The survey will take <10 minutes to complete. All data will be collected anonymously, and we will not ask for your name or any identifying information. Your participation in this study is voluntary. This study will help us to understand the factors contributing to body image in female CF patients.

If you choose not to participate or to exit the survey at any time, there will be no penalty. The results of this research study may be used in reports, presentations, and publications, and shared with other investigators, but your name or identity will not be known.

If you have any questions concerning the research study, please contact me, Lauren Catron at lcatron@asu.edu, or you can reach Dr. Johnston at carol.johnston@asu.edu. If you have any questions about your rights as a subject/participant in this research, or if you feel you have been placed at risk, you can contact the Chair of the Human Subjects Institutional Review Board, through the ASU Office of Research Integrity and Assurance, at (480) 965-6788.

Completing the survey will be considered consent to participate in the study.

Thank you!

Question Title

* 1. Have you experienced, or are experiencing, any of the following?

Psychotic or bipolar disorders
Past drug abuse
Acute illness.

Yes

Question Title

* 2. Have you been diagnosed with cystic fibrosis?

Yes

Question Title

* 3. What is your mutation?

At least one copy of the delta F508 mutation

No copies of the delta F508 mutation

I'm not sure

I do not have cystic fibrosis

Question Title

* 4. What gender do you identify as?

Male

Female

Non-binary / third gender

Prefer not to say

Question Title

* 5. What is your age?

18 years of age or older

Less than 18 years of age

Question Title

* 6. What is your race/ethnicity?

American Indian/Alaska Native

African-American

Native Hawaiian/Other Pacific Islander

Asian

Hispanic or Latino

White

Other

Question Title

* 7. What is your household income?

Less than $30,000

Between $30,000 and $70,000

Greater than $70,000

Question Title

* 8. What is your weight in pounds?

Question Title

* 9. What is your height in inches? (5 feet = 60 inches)

Question Title

* 10. Do you smoke, use recreational drugs, or drink on average more than one alcoholic beverage daily?

Yes

Question Title

* 11. In the last 7 days, how many times did you participate in any of the following kinds of exercises for more than 15 minutes.

Mild exercise (minimal effort): Easy walking, golf, gardening, bowling, yoga, fishing, horseshoes, archery, etc.

Question Title

* 12. In the last 7 days, how many times did you participate in any of the following kinds of exercises for more than 15 minutes.

Strenuous exercise activities (heart beats rapidly): Running, jogging, hockey, football, soccer, squash, basketball, cross country skiing, judo, roller skating, vigorous swimming, vigorous long distance bicycling, etc.

Question Title

* 13. In the last 7 days, how many times did you participate in any of the following kinds of exercises for more than 15 minutes.

Moderate exercise (not exhausting): Fast walking, easy bicycling, tennis, easy swimming, badminton, dancing, volleyball, baseball, etc.

The next few questions are aimed at understanding what gene-modulating drugs you have been prescribed, if any. A gene-modulating drug is a relatively new class of drugs that treat the underlying cellular mechanism that causes cystic fibrosis in certain mutations.

These are the gene-modulating drugs this survey asks about:

Trikafta (elexacaftor/tezacaftor/ivacaftor and ivacaftor), approved in 2019
Symdeko (tezacaftor/ivacaftor and ivacaftor), approved in 2018
Orkambi (lumacaftor/ivacaftor), approved in 2015
Kalydeco (ivacaftor), approved in 2012

If you have not been prescribed a gene-modulating drug, there will be an option to answer appropriately.

Question Title

* 14. Have you ever been prescribed a gene-modulating drug?

Yes

Question Title

* 15. What gene-modulating drugs have you been prescribed, either in the past or are currently taking?

	Current prescription	Past prescription	Never had a prescription	Note sure
Trikafta	Trikafta Current prescription	Trikafta Past prescription	Trikafta Never had a prescription	Trikafta Note sure
Symdeko	Symdeko Current prescription	Symdeko Past prescription	Symdeko Never had a prescription	Symdeko Note sure
Orkambi	Orkambi Current prescription	Orkambi Past prescription	Orkambi Never had a prescription	Orkambi Note sure
Kalydeco	Kalydeco Current prescription	Kalydeco Past prescription	Kalydeco Never had a prescription	Kalydeco Note sure

Question Title

* 16. If you are currently prescribed Trikafta, when did that prescription start?

Within the last 12 months

Over 12 months ago

I do not have a prescription for Trikafta

Question Title

* 17. Have you experienced any changes to your baseline weight since starting on a gene-modulating drug?

Yes, I have gained weight

Yes, I have lost weight

No, I have not gained or lost weight

I am not sure

I am not on a gene-modulating drug

The last section contains 8 questions having to do with measuring body image. Body image is not simply “how you look”, but also the sense a person has of their own physical appearance and a sense a person has of how others perceive their physical appearance.

These questions might feel uncomfortable to answer. Remember that there are no "right" or "wrong" answers and that all responses are completely anonymous.

Question Title

* 18. In the last FOUR WEEKS:

	Never	Rarely	Sometimes	Often	Very often	Always
Have you been afraid that you might become fat (or fatter)?	Have you been afraid that you might become fat (or fatter)? Never	Have you been afraid that you might become fat (or fatter)? Rarely	Have you been afraid that you might become fat (or fatter)? Sometimes	Have you been afraid that you might become fat (or fatter)? Often	Have you been afraid that you might become fat (or fatter)? Very often	Have you been afraid that you might become fat (or fatter)? Always
Has feeling full (e.g. after eating a large meal) made you feel fat?	Has feeling full (e.g. after eating a large meal) made you feel fat? Never	Has feeling full (e.g. after eating a large meal) made you feel fat? Rarely	Has feeling full (e.g. after eating a large meal) made you feel fat? Sometimes	Has feeling full (e.g. after eating a large meal) made you feel fat? Often	Has feeling full (e.g. after eating a large meal) made you feel fat? Very often	Has feeling full (e.g. after eating a large meal) made you feel fat? Always
Has thinking about your shape interfered with your ability to concentrate (e.g. while watching television, reading, listening to conversations)?	Has thinking about your shape interfered with your ability to concentrate (e.g. while watching television, reading, listening to conversations)? Never	Has thinking about your shape interfered with your ability to concentrate (e.g. while watching television, reading, listening to conversations)? Rarely	Has thinking about your shape interfered with your ability to concentrate (e.g. while watching television, reading, listening to conversations)? Sometimes	Has thinking about your shape interfered with your ability to concentrate (e.g. while watching television, reading, listening to conversations)? Often	Has thinking about your shape interfered with your ability to concentrate (e.g. while watching television, reading, listening to conversations)? Very often	Has thinking about your shape interfered with your ability to concentrate (e.g. while watching television, reading, listening to conversations)? Always
Have you imagined cutting off fleshy areas of your body?	Have you imagined cutting off fleshy areas of your body? Never	Have you imagined cutting off fleshy areas of your body? Rarely	Have you imagined cutting off fleshy areas of your body? Sometimes	Have you imagined cutting off fleshy areas of your body? Often	Have you imagined cutting off fleshy areas of your body? Very often	Have you imagined cutting off fleshy areas of your body? Always
Have you felt excessively large and rounded?	Have you felt excessively large and rounded? Never	Have you felt excessively large and rounded? Rarely	Have you felt excessively large and rounded? Sometimes	Have you felt excessively large and rounded? Often	Have you felt excessively large and rounded? Very often	Have you felt excessively large and rounded? Always
Have you thought that you are in the shape you are because you lack self-control?	Have you thought that you are in the shape you are because you lack self-control? Never	Have you thought that you are in the shape you are because you lack self-control? Rarely	Have you thought that you are in the shape you are because you lack self-control? Sometimes	Have you thought that you are in the shape you are because you lack self-control? Often	Have you thought that you are in the shape you are because you lack self-control? Very often	Have you thought that you are in the shape you are because you lack self-control? Always
Has seeing your reflection (e.g. in a mirror or shop window) made you feel bad about your shape?	Has seeing your reflection (e.g. in a mirror or shop window) made you feel bad about your shape? Never	Has seeing your reflection (e.g. in a mirror or shop window) made you feel bad about your shape? Rarely	Has seeing your reflection (e.g. in a mirror or shop window) made you feel bad about your shape? Sometimes	Has seeing your reflection (e.g. in a mirror or shop window) made you feel bad about your shape? Often	Has seeing your reflection (e.g. in a mirror or shop window) made you feel bad about your shape? Very often	Has seeing your reflection (e.g. in a mirror or shop window) made you feel bad about your shape? Always
Have you been particularly self-conscious about your shape when in the company of other people?	Have you been particularly self-conscious about your shape when in the company of other people? Never	Have you been particularly self-conscious about your shape when in the company of other people? Rarely	Have you been particularly self-conscious about your shape when in the company of other people? Sometimes	Have you been particularly self-conscious about your shape when in the company of other people? Often	Have you been particularly self-conscious about your shape when in the company of other people? Very often	Have you been particularly self-conscious about your shape when in the company of other people? Always

Thank you for completing this survey.

Question Title

* 1. Have you experienced, or are experiencing, any of the following?Psychotic or bipolar disordersPast drug abuseAcute illness.

Question Title

* 2. Have you been diagnosed with cystic fibrosis?

Question Title

* 3. What is your mutation?

Question Title

* 4. What gender do you identify as?

Question Title

* 5. What is your age?

Question Title

* 6. What is your race/ethnicity?

Question Title

* 7. What is your household income?

Question Title

* 8. What is your weight in pounds?

Question Title

* 9. What is your height in inches? (5 feet = 60 inches)

Question Title

* 10. Do you smoke, use recreational drugs, or drink on average more than one alcoholic beverage daily?

Question Title

* 11. In the last 7 days, how many times did you participate in any of the following kinds of exercises for more than 15 minutes. Mild exercise (minimal effort): Easy walking, golf, gardening, bowling, yoga, fishing, horseshoes, archery, etc.

Question Title

Question Title

* 13. In the last 7 days, how many times did you participate in any of the following kinds of exercises for more than 15 minutes. Moderate exercise (not exhausting): Fast walking, easy bicycling, tennis, easy swimming, badminton, dancing, volleyball, baseball, etc.

Question Title

* 14. Have you ever been prescribed a gene-modulating drug?

Question Title

* 15. What gene-modulating drugs have you been prescribed, either in the past or are currently taking?

Question Title

* 16. If you are currently prescribed Trikafta, when did that prescription start?

Question Title

* 17. Have you experienced any changes to your baseline weight since starting on a gene-modulating drug?

Question Title

* 18. In the last FOUR WEEKS:

* 1. Have you experienced, or are experiencing, any of the following?

Psychotic or bipolar disorders
Past drug abuse
Acute illness.

* 11. In the last 7 days, how many times did you participate in any of the following kinds of exercises for more than 15 minutes.

Mild exercise (minimal effort): Easy walking, golf, gardening, bowling, yoga, fishing, horseshoes, archery, etc.

* 13. In the last 7 days, how many times did you participate in any of the following kinds of exercises for more than 15 minutes.

Moderate exercise (not exhausting): Fast walking, easy bicycling, tennis, easy swimming, badminton, dancing, volleyball, baseball, etc.