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

Psychotic or bipolar disorders
Past drug abuse
Acute illness.
2.Have you been diagnosed with cystic fibrosis?
3.What is your mutation?
4.What gender do you identify as?
5.What is your age?
6.What is your race/ethnicity?
7.What is your household income?
8.What is your weight in pounds?
9.What is your height in inches? (5 feet = 60 inches)
10.Do you smoke, use recreational drugs, or drink on average more than one alcoholic beverage daily?
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.
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.
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.
14.Have you ever been prescribed a gene-modulating drug?
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
Symdeko
Orkambi
Kalydeco
16.If you are currently prescribed Trikafta, when did that prescription start?
17.Have you experienced any changes to your baseline weight since starting 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.
18.In the last FOUR WEEKS:
Never
Rarely
Sometimes
Often
Very often
Always
Have you been afraid that you might become fat (or fatter)?
Has feeling full (e.g. after eating a large meal) made you feel fat?
Has thinking about your shape interfered with your ability to concentrate (e.g. while watching television, reading, listening to conversations)?
Have you imagined cutting off fleshy areas of your body?
Have you felt excessively large and rounded?
Have you thought that you are in the shape you are because you lack self-control?
Has seeing your reflection (e.g. in a mirror or shop window) made you feel bad about your shape?
Have you been particularly self-conscious about your shape when in the company of other people?
Thank you for completing this survey.