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Survey - Please Scroll Down

 

Survey of HIV-Negative Patients with
Pulmonary Disease Caused by Non-Tuberculous Mycobacteria

Consent to Participate in Research Study

Researchers from UCSD (University of California-San Diego) are leading a study to learn more about pulmonary disease caused by NTM (non-tuberculous mycobacteria). You have been asked to take part because you are an adult with NTM infection but do not have HIV (human immunodeficiency virus) infection. The purpose of this study is to identify potential causes of NTM infection and ways to improve NTM lung disease. We expect over 200 participants in this study.

If you agree to be in this study, you will fill out the following survey that covers your personal background, clinical and medical history, medical care and treatment, and lifestyle habits. You will be asked whether the study researchers can contact you for future studies. The survey will take 20-30 minutes to complete and can be submitted online or by mail to UCSD (address below).

Participation in this study may involve potential loss of confidentiality. Security measures are implemented for the website and computer systems used in this study. Research records will be kept confidential to the fullest extent allowed by law. Your information can be accessed by investigators in the study. Your information may be used for future studies only if you give permission on the survey to be contacted. Research results will be reported only in groups and will not be linked to you personally.

Participation in this study is entirely voluntary. There will not be any direct benefit to you from participating in this study. However, study findings may help physicians to provide better care to NTM patients.

You may call the UCSD Human Research Protections Program office at (858) 455-5050 to inquire about your rights as a research subject. If you have other study-related questions, you may reach Phung Lam, Ph.D., at (619) 543-5550 or ntmresearch@ucsd.edu. Mailing address: UCSD Medical Center, Dr. Phung Lam, 200 West Arbor Drive #8374, San Diego, CA 92103-837

Please respond to every question in this survey, and forward this survey to other NTM patients who may not be on-line. We really appreciate your time and efforts.

 

Click Here to Download PDF, Print & Fax or Mail the survey

FOR FUTURE STUDIES

1. Can we contact you to inform you of future studies (such as clinical trials on new therapy)?

Yes
No

Please fill out all or preferred contact information:
First Name:

Last Name:

Address:
City:
State: Zip:
Email Address:

2. In future studies, would you be willing to participate in the following ways (check all that apply):

Fill out surveys
Give blood
Give household water samples
Give residential soil samples
Be on new treatment regimens
None of the above

 

A. BACKGROUND

1. Date of birth (month-day-year):

2. Gender:

Male
Female

3. Race:

White
Asian / Pacific Islander
Black / African
Hispanic
Native American
Other

4. Highest Education level:

Less than High School
High school graduate
Some college
College degree
Advanced degree

5. Are you currently employed?

Yes
No


6. Main occupation (current, or past if not currently employed):



a. Was this work environment a (check one):

Indoor office
Indoor factory
Indoor non-factory with machinery
Outdoors without heavy equipment
Outdoors with heavy equipment


b. Did this environment have:

Airborne dust
Water aerosol
Chemicals
None of the above


 7. Birthplace:

City, State:


8. Where did you live for the longest time (complete table for the top 3 residences)?

City, State: Years in residence:

City, State: Years in residence:

City, State: Years in residence:


9. Residence when symptoms began:

City, State:

a. How long had you lived there when your symptoms began?

Years (approx):

b. Type of area:

Agricultural / Rural
Industrial / Urban

c. Age of the residence: years old

d. Did this residence have (check all that apply):

Central air conditioning
Forced air heating
Copper household pipe
Zinc household pipe
PVC household pipes
Carpeting
None of the above


e. Water source of this residence:

Utility
Well
Other

f. Was the water treated?

Yes
No
Unknown

If yes, which disinfectants were used?


g. Was the residence near a (check all that apply):

Pond
Lake
Ocean
Farm
None of the Above

10. Current residence:

Address:

City: State: Zip:

 

B. MEDICAL HISTORY

1. When was your first onset of symptoms (month-year)?

2. Initial symptoms (check all that apply):

None
Hemoptysis (coughing up blood)
Cough
Weight loss
Loss of appetite
Fatigue
Shortness of breath
Fever
Depression
Other
Please specify:

3. When did a doctor first tell you that you have NTM (month-year)?

4. What type of doctor was the one who first told you that you have NTM:

Primary care doctor
Infectious disease dosctor
Pulmonary doctor
Unknown
Other
Please specify:

5. How was the respiratory sample obtained for this first diagnosis:

Coughed up sputum
Induced sputum (inhaled mist)
Bronchoscopy
Lung biopsy
Not done
Other
Please specify:

6. Which type of NTM did your doctor first tell you that you have (check all that apply)?

M. avium-intracellulare complex (i.e., MAC or MAI)
M. abscessus
M. kansasii
M. fortuitum
M. chelonae
M. gordonae
Unknown
Other
Please specify:

7. Before your first NTM diagnosis, had you ever tested positive on a skin test for TB?

Yes
No
Unknown

8. Before your first NTM diagnosis, did a doctor ever tell you that you had TB?

Yes
No
Unknown

a. Were you treated for TB?

Yes
No
Unknown

b. Did you complete your treatment for TB?

Yes
No
Unknown

9. Do you have a family history of any of the following lung conditions (check all that apply)?

No lung disease in family
TB
NTM disease
Cystic Fibrosis
Unknown
Other lung disease:
Please specify:

10. Do you have a personal history of any of the following conditions (check all that apply)?

Cystic Fibrosis
Hypersensitivity Pneumonitis
Bronchiectasis
COPD
Emphysema
Bronchitis
Sinusitis
Recurrent pneumonia
Childhood pneumonia
Pulmonary fibrosis
Pulmonary embolus
Pneumothorax
Cancer
Gastroesophageal reflux
Diverticulitis
Chronic diarrhea
Chronic constipation
Mitral valve prolapse
Scoliosis
Protruding breast bone
Sunken breast bone
Other non-NTM conditions
Please specify:

11. Current symptoms (check all that apply):

None
Hemoptysis (coughing up blood)
Cough
Weight loss
Loss of appetite
Fatigue
Shortness of breath
Fever
Depression
Other
Please specify:

12. Do your symptoms worsen with changes in weather?

Yes
No
Unknown

a. If yes, are you affected by (check all that apply):

Increase in temperature
Decrease in temperature
Increase in humidity
Decrease in humidity
Other weather changes:
Please specify:

b. How have you coped with weather changes?


13. Weight before symptoms began (fill numbers in blanks): pounds

14. Current weight (fill numbers in blanks): pounds

15. Current height (fill numbers in blanks): feet, inches

16. What is your current energy level?

Very low
Low
Medium
High
Very high energy level

17. Have you had vaccinations?

Yes
No
Unknown


a. TB (or BCG) shot:

Yes
No
Unknown

If yes, what year:


b. Pneumonia (Pneumovax) shot:

Yes
No
Unknown

If yes, what year:


b. Flu (Influenza) shot:

Yes
No
Unknown

If yes, what year:

 

C. MEDICAL CARE AND TREATMENT

1. In the last 12 months, how many times were you hospitalized?

(approximate number of times)

2. In the last 12 months, how many times did you visit your doctor (not counting hospital stays) for NTM infection or lung troubles?

(approximate number of times)


3. Have you ever taken medications for NTM infection?

Yes
No
Unknown


If yes, complete table and questions below. If no, skip to Question 5c.

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

4. If you have taken medications, how many courses or cycles of therapy have you had?

cycles

a. Did you take the medications as directed by your doctor or pharmacist?

Yes
No


b. If you had multiple cycles of therapy, did you have recurrence of symptoms after a previous therapy cycle was stopped?

Yes
No
Unknown

5. Are you currently treated for NTM infection?

Yes
No - (If no, skip to 5c.)
Unknown

If you are currently treated for NTM infection:

a. How long have you been under the current treatment regimen?

months or
years

b. How have your current conditions changed compared to your conditions before you started the current treatment?


(1) Cough:
Worsened Unchanged Improved Resolved N/A

(2) Hemoptysis:
Worsened Unchanged Improved Resolved N/A

(3) Weight loss:
Worsened Unchanged Improved Resolved N/A

(4) Loss of appetite:
Worsened Unchanged Improved Resolved N/A

(5) Fatigue:
Worsened Unchanged Improved Resolved N/A

(6) Short of breath:
Worsened Unchanged Improved Resolved N/A

(7) Fever:
Worsened Unchanged Improved Resolved N/A

(8) Depression:
Worsened Unchanged Improved Resolved N/A

(9) X-ray/ CT results:
Worsened Unchanged Improved Resolved N/A

(10) Culture results:
Still positive Converted to negative Unknown

 

 

c. How have your current conditions changed compared to your conditions 12 months ago?

(1) Cough:
Worsened Unchanged Improved Resolved N/A

(2) Hemoptysis:
Worsened Unchanged Improved Resolved N/A

(3) Weight loss:
Worsened Unchanged Improved Resolved N/A

(4) Loss of appetite:
Worsened Unchanged Improved Resolved N/A

(5) Fatigue:
Worsened Unchanged Improved Resolved N/A

(6) Short of breath:
Worsened Unchanged Improved Resolved N/A

(7) Fever:
Worsened Unchanged Improved Resolved N/A

(8) Depression:
Worsened Unchanged Improved Resolved N/A

(9) X-ray/ CT results:
Worsened Unchanged Improved Resolved N/A

(10) Culture results:
Still positive Converted to negative Unknown


6. Are you taking medications for medical conditions other than NTM infection? (Include over-the-counter medications, herbal medicines, and supplements)

Yes
No
Unknown

(Fill in names of other medications)

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

Medication: Year - Month (mm/yy) started: Year - Month (mm/yy) stopped:

 

 

7. Are you receiving any of the following therapy other than medications (check all that apply)?

Rehabilitation
Holistic treatment
Respiratory therapy (Flutter valve, Acapella, postural drainage, chest percussion)
None of the above
Other
Please specify:

8. Have you undergone:
Corticosteroid therapy (e.g., prednisone)
Cancer chemotherapy
Radiation to breast/ chest
Lung surgery
None of the above

 

D. LIFESTYLE HABITS

1. Have you ever smoked cigarettes?

Yes
No

a. At what age did you start smoking? years old
b. At what age did you stop smoking? years old, OR Still smoking

c. When you smoked, how many cigarettes did you smoke?
cigarettes per day, OR cigarettes per week

2. In your lifetime, have you been around smokers while they were smoking?

Yes
No
Unknown

a. For how many years of your life were you around anyone who was smoking? years

b. During these years, how much time on average did you spend with them?
Occasionally hours per day, or hours per week

c. In the last 12 months, have you been around anyone who was smoking?

Yes
No


If yes, how much time on average were you around others while they were smoking?
Occasionally hours per day, or hours per week

3. Have you ever taken calcium supplements?

Yes
No

a. At what age did you start taking calcium supplements? years old
b. At what age did you stop? years old, OR Still taking calcium

c. How often did you take calcium supplements?
Occasionally Once daily Twice daily 3 times daily

d. What was the dose of a single calcium supplement that you took? mg

 

4. In the last 12 months, did you consume the following foods (fill in for each item)?

None below

Servings per week OR per month

a. Milk
glasses per week
glasses per month

b. Yogurt
cups per week
cups per month

c. Cheese
servings (1 oz./serving) per week
servings (1 oz./serving) per month

d. Green leafy vegetables
cups per week
cups per month

e. Calcium fortified food:

cups per week

cups per month

 

5. How often did you take baths or showers in the time before or after your first NTM diagnosis?

Before your first NTM diagnosis

a. Baths
times per week
times per month

b. Showers
times per week
times per month


In last 12 months

a. Baths
times per week
times per month

b. Showers
times per week
times per month

 

6. Have you ever used hottubs?

Yes
No

a. At what age did you start using hottubs? years old

b. At what age did you stop? years old, OR Still using hottubs

c. When you used hottubs, how often did you use them in a 12-month period?

Occasionally times per month, or times per year

 

7. Do you ever swim?

Yes
No

a. At what age did you start swimming? years old

b. At what age did you stop? years old, OR Still swimming

c. When you swam, where and how often did you swim in a 12-month period?

Indoor pool: Occasionally times per month, or times per year

Outdoor pool: Occasionally times per month, or times per year

8. Have you had any hydrotherapy? Yes No


9. Have you had a pedicure? Yes No


10. Do you regularly use a hair dryer? Yes No


11. Have you ever gardened? Yes No

a. At what age did you start gardening? years old

b. At what age did you stop? years old, OR Still using gardening

c. When you gardened, where and how often did you do this in a 12-month period?

Indoors: Occasionally times per month, or times per year

Outdoors: Occasionally times per month, or times per year

d. Planting material used: Potting soil Peat moss Other

12. Have you ever had pets? Yes No
If yes, complete the table for each type of pet you had.

When you last had this type of pet?

a. Birds
years ago Still has pet
years in total

b. Dogs
years ago Still has pet
years in total

c. Cats
years ago Still has pet
years in total

d. Other
years ago Still has pet
years in total

e. Other
years ago Still has pet
years in total



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