Survey of Exercise Behaviors and Exercise Perceptions in Individuals with Primary

Survey of Exercise Behaviors and Exercise Perceptions in Individuals with Primary Immunodeficiency

Q1 You are invited to participate in a research study about exercise behaviors and exercise perception in individuals with a diagnosis of primary immunodeficiency disease. Your participation in this survey is anonymous and voluntary. You can stop participation in the survey at any point. If you decide to participate, you will complete an online survey that will take approximately 15-30 minutes to complete. Please read the Informed Consent prior to beginning this survey. Irbapp ksowers piddsurvey 052016 appendixd Please select the appropriate box, confirming you have downloaded and read the informed consent, and indicating your choice regarding participation in this survey.

 I have read the above information, am at least 18 years old, and agree to participate in this research survey. (1)

 I do not wish to participate in this research survey. (2)

If I do not wish to participat... Is Selected, Then Skip To End of Survey

Q3 What is your primary immunodeficiency disease diagnosis? (Select all that apply.)

 Common variable immune deficiency (CVID) (1)

 IgG subclass deficiency (2)

 Selective IgA deficiency (3)

 Agammaglobulinemia (4)

 Severe combined immune deficiency (SCID) (5)

 Hyper IgM syndrome (6)

 Specific antibody deficiency (SAD) (7)

 Chronic granulomatous disease (CGD) (8)

 DiGeorge syndrome (9)

 Wiskott-Aldrich syndrome (WAS) (10)

 Complement deficiency (11)

 Unsure (12)

 Other (please list) (13) ______

Q4 What is your age group?

 18 – 29 years (1)

 30 – 44 years (2)

 45 – 64 years (3)

 65 years or older (4)

Q5 What is your gender?

 Male (1)

 Female (2)

 Prefer not to identify (3)

Q6 How long have you been diagnosed with a primary immunodeficiency disease?

 Less than 1 year (1)

 1 - 5 years (2)

 6 - 10 years (3)

 11 - 15 years (4)

 More than 15 years (5)

Q7 What was the length of time between the start of your symptoms and your diagnosis of a primary immunodeficiency disease?

 Less than 1 year (1)

 1 - 5 years (2)

 6 - 10 years (3)

 11 - 15 years (4)

 More than 15 years (5)

Q8 Are you currently receiving treatment for your primary immunodeficiency disease? (Check all that apply.)

 Not currently on any treatment (1)

 Intravenous immunoglobulin (IVIG) (2)

 Subcutaneous immunoglobulin (SCIG) (3)

 Prophylactic antibiotics (4)

 Other (please list) (5) ______

Q9 Do you currently have a significant or measurable loss of function in any of the following areas that impact your ability to perform daily physical activities? (Check all that apply.)

 No permanent loss (1)

 Neurological Function (2)

 Mobility/Physical Activity (3)

 Digestive Function (4)

 Hearing (5)

 Vision (6)

 Lung/Pulmonary Function (7)

 Other (please list) (8) ______

Q10 How would you describe your current health status?

 Excellent (1)

 Very Good (2)

 Good (3)

 Fair (4)

 Poor (5)

Q11 Does your current health status limit your ability to participate in physical activities (activities of daily living) at home (such as bathing, dressing, cooking, cleaning, etc.)?

 No limitations at all (1)

 Slight limitations (2)

 Moderate limitations (3)

 Severe limitations (4)

Q12 Does your current health status limit your ability to participate in physical activities (instrumental activities of daily living) in your community (such as employment, shopping, volunteer activities, etc.)?

 No limitations at all (1)

 Slight limitations (2)

 Moderate limitations (3)

 Severe limitations (4)

Q13 An exercise program is defined as any physical activity that is performed in addition to your daily routine activities. When was the last time you participated in an exercise program?

 Never (1)

 More than 1 year ago (2)

 Within the past year (3)

 Within the past 6 months (4)

 Within the past 3 months (5)

 Within the past month (6)

 I am currently participating in an exercise program (7)

Q14 Please identify the main barriers to your participation in an exercise program. (Choose all that apply.)

 Lack of time (1)

 Fatigue (2)

 Lack of motivation (3)

 Exercise is not enjoyable (4)

 Exercise is boring (5)

 Exercise is painful (6)

 Lack of confidence (7)

 Fear of being injured (8)

 Fear of health condition worsening (9)

 Lack of support or encouragement (10)

 Difficulty setting goals (11)

 Lack of place or equipment (12)

 Lack of success in the past (13)

 Other (please list) (14) ______

Q15 In a normal week, how much time do you spend participating in an exercise program?

 I am not participating in an exercise program (1)

 Less than 30 minutes (2)

 30 minutes to 1 hour (3)

 1 - 3 hours (4)

 4 - 7 hours (5)

 More than 7 hours (6)

Q16 When you participate in an exercise program, at what level of exercise do you participate? (Check all that apply.)

 I do not participate in an exercise program (1)

 Light exercise (slow walking or equivalent) (2)

 Moderate exercise (brisk walking/slow jogging or equivalent) (3)

 Vigorous exercise (running or equivalent) (4)

Q17 When you participate in an exercise program, how long do you typically exercise for in that one session?

 Less than 20 minutes (1)

 20 - 40 minutes (2)

 41 - 60 minutes (3)

 61 - 90 minutes (4)

 More than 90 minutes (5)

Q18 When you participate in an exercise program, in what activities are you most likely to engage? (Check all that apply.)

 Stretching (1)

 Walking (2)

 Jogging (3)

 Running (4)

 Hiking (5)

 Horseback riding (6)

 Cycling or Spinning (7)

 Stationary bicycle (8)

 Elliptical or Stairmaster (9)

 Swimming/Aquatics (10)

 Boxing (11)

 Rowing (kayak, canoe) (12)

 Weight lifting (13)

 Yoga (14)

 Tai Chi (15)

 Zumba, Dancing, or Other organized class (16)

 Specific sport (please list) (17) ______

 Other (please list) (18) ______

Q19 On a typical day, how much does your health limit your ability to complete vigorous activities (running, lifting heavy objects, participating in strenuous sports)?

 Not at all (1)

 A little (2)

 A lot (3)

 Completely (4)

Q20 On a typical day, how much does your health limit your ability to complete moderate activities (cleaning, vacuuming, golf)?

 Not at all (1)

 A little (2)

 A lot (3)

 Completely (4)

Q21 On a typical day, how much does your health limit your ability to lift or carry groceries?

 Not at all (1)

 A little (2)

 A lot (3)

 Completely (4)

Q22 On a typical day, how much does your health limit your ability to climb 2 or more flights of stairs?

 Not at all (1)

 A little (2)

 A lot (3)

 Completely (4)

Q23 On a typical day, how much does your health limit your ability to climb one flight of stairs?

 Not at all (1)

 A little (2)

 A lot (3)

 Completely (4)

Q24 On a typical day, how much does your health limit your ability to perform activities that require bending, stooping, or kneeling?

 Not at all (1)

 A little (2)

 A lot (3)

 Completely (4)

Q25 On a typical day, how much does your health limit your ability to walk more than one mile?

 Not at all (1)

 A little (2)

 A lot (3)

 Completely (4)

Q26 On a typical day, how much does your health limit your ability to walk a half mile?

 Not at all (1)

 A little (2)

 A lot (3)

 Completely (4)

Q27 On a typical day, how much does your health limit your ability to walk 900 feet?

 Not at all (1)

 A little (2)

 A lot (3)

 Completely (4)

Q28 On a typical day, how much does your health limit your ability to bathe or dress yourself?

 Not at all (1)

 A little (2)

 A lot (3)

 Completely (4)

Q29 In the past week, have you felt the need to pace yourself, take frequent rest breaks, or reduce your level of physical activity?

 Not at all (1)

 A little (2)

 A lot (3)

 Completely (4)

Q31 Exercise decreases my stress level and improves my mental well-being.

 Strongly agree (1)

 Agree (2)

 Disagree (3)

 Strongly disagree (4)

Q32 Exercising takes too much time.

 Strongly agree (1)

 Agree (2)

 Disagree (3)

 Strongly disagree (4)

Q33 Exercising will use up too much of my energy and will make me tired.

 Strongly agree (1)

 Agree (2)

 Disagree (3)

 Strongly disagree (4)

Q34 I find it challenging to exercise at my home.

 Strongly agree (1)

 Agree (2)

 Disagree (3)

 Strongly agree (4)

Q35 I am able to easily access a fitness center for exercise.

 Strongly agree (1)

 Agree (2)

 Disagree (3)

 Strongly Disagree (4)

Q36 I am too embarrassed to participate in an exercise program.

 Strongly agree (1)

 Agree (2)

 Disagree (3)

 Strongly disagree (4)

Q37 I would like to get involved in an exercise program in the next few months.

 Strongly agree (1)

 Agree (2)

 Disagree (3)

 Strongly disagree (4)

Q38 I worry that exercise will worsen my health status.

 Strongly agree (1)

 Agree (2)

 Disagree (3)

 Strongly disagree (4)

Q39 I would be interested in participating in a home-based exercise program that is customized to my individual needs.

 Strongly agree (1)

 Agree (2)

 Disagree (3)

 Strongly disagree (4)