Form VA Form 10-21047a VA Form 10-21047a Biannual Telephone Interview, National Registry of Veter

DEPARTMENT OF VETERANS AFFAIRS OMB 2900-0649
Estimated Burden: 30 min.

Biannual Telephone Interview

National Registry of Veterans with ALS

R

egistry ID #____________ Interviewer Name: _______________________

Date of Interview: _____/_____/_____ Time of Interview: ________ AM PM

Survey Interval:

_____ Baseline _____ 18-month _____ 36-month

_____ 6-month _____ 24-month

_____ 12-month _____ 30-month

Hello. This is (NAME) from the National Registry of Veterans with ALS. May I speak to (name of veteran, or proxy who provided information on the previous interview)?

I am calling to ask you a few questions about your (the veteran’s) health as part of our regular follow-up for the registry. Is this a good time to talk? (If no, note a day and time when you should call back: _______________)

If participant has died, note death date: _____/_____/_____

Proxy Respondent? _____Yes _____No

If yes, specify ____Spouse _____Child ____Sibling ____Parent ____Partner _____Friend

_____ Health Care Provider _____Other (specify):______________________________________

Name of proxy respondent: ________________________________________________________________

(If new proxy, get contact information) Address___________________________________________

___________________________________________

___________________________________________

Phone ( )_______________________

1. Only ask if: Suspected ALS, or an Indeterminate diagnosis. (All others, skip to ALSFRS)

We would like to ask you about your current diagnosis, since we know that diagnoses can change over time.

1. What is your (the veteran’s) current diagnosis? (Check all that apply)

 ALS (confirmed by a physician)

 Maybe/Possibly ALS (not yet determined/diagnosed)

 Primary lateral sclerosis

 Progressive bulbar palsy

 Progressive muscular atrophy

 Other (please specify): ____________________________________________

2. Have you seen a neurologist or had any medical tests since the last time we spoke with you (insert date here in database if possible)?  YES  NO

If No, skip to Section B

3. We would like to request copies of these new medical records so we can add them to your medical record file with the Registry. What is the name of the neurologist you saw or the medical facility where you had tests?

a. Neurologist Name (if applicable) :_________________________________________

Medical Facility (if applicable): ___________________________________________

Is this a neurologist you have seen before or a medical facility you have visited before?

 YES  NO

If Yes, skip to next neurologist/facility (if applicable) or Section B

If NO, obtain address of neurologist of facility:

______________________________________________________

______________________________________________________

b. Neurologist Name (if applicable) :_________________________________________

Medical Facility (if applicable): ___________________________________________

Is this a neurologist you have seen before or a medical facility you have visited before?

 YES  NO

If Yes, skip to next neurologist/facility (if applicable) or Section B

If NO, obtain address of neurologist of facility:

______________________________________________________

______________________________________________________

______________________________________________________

c. Neurologist Name (if applicable) :_________________________________________

Medical Facility (if applicable): ___________________________________________

Is this a neurologist you have seen before or a medical facility you have visited before?

 YES  NO

If Yes, skip to Section B

If NO, obtain address of neurologist of facility:

______________________________________________________

______________________________________________________

______________________________________________________

B. ALS Functional Rating Scale (For all participants)

These following questions ask you about limitations due to your health (the veteran’s health). For each item, please indicate the category that most describes your current state of health.

1. Speech

___ (4) Normal speech processes

___ (3) Detectable speech disturbance

___ (2) Intelligible with repeating

___ (1) Speech combined with non-vocal communication

___ (0) Loss of usual speech

2. Salivation

___ (4) Normal

___ (3) Slight but definite excess of saliva in mouth, may have nighttime drooling

___ (2) Moderately excessive saliva, may have minimal drooling

___ (1) Marked excess of saliva with some drooling

___ (0) Marked drooling, requires constant tissue or handkerchief

3. Swallowing

___ (4) Normal eating habits

___ (3) Early eating problems – occasional choking

___ (2) Dietary consistency changes

___ (1) Needs supplemental tube feeding

___ (0) Nothing taken by mouth (exclusively parenteral or enteral feeding)

4. Handwriting (with dominant hand)

___ (4) Normal

___ (3) Slow or sloppy: all words are legible

___ (2) Not all words are legible

___ (1) Able to grip pen but unable to write

___ (0) Unable to grip pen

Uses a feeding tube: No- go to Q. 5a

Yes- go to Q. 5b

5a. Cutting food and handling utensils (patients without gastrostomy)

___ (4) Normal

___ (3) Somewhat slow and clumsy but no help needed

___ (2) Can cut most foods, although clumsy and slow; some help needed

___ (1) Food must be cut by someone, but can still feed slowly

___ (0) Needs to be fed

5b. Use of feeding tube (for patients with gastrostomy)

___ (4) Normal

___ (3) Clumsy but able to perform all manipulations independently

___ (2) Some help needed with closures and fasteners

___ (1) Provide minimal assistance to caregiver

___ (0) Unable to perform any aspect of task

6. Dressing and hygiene

___ (4) Normal function

___ (3) Independent and complete self-care with effort or decreased efficiency

___ (2) Intermittent assistance or substitute methods

___ (1) Need attendant for self-care

___ (0) Total dependence

7. Turning in bed and adjusting bed clothes

___ (4) Normal

___ (3) Somewhat slow and clumsy, but no help needed

___ (2) Can turn alone or adjust sheets, but with great difficulty

___ (1) Can initiate, but not turn or adjust sheets alone

___ (0) Unable to do

8. Walking

___ (4) Normal

___ (3) Early ambulation difficulties (any assistive devices including AFOs)

___ (2) Walk with assistance

___ (1) Non-ambulatory functional movement only

___ (0) No purposeful leg movement

9. Climbing stairs

___ (4) Normal

___ (3) Slow

___ (2) Mild unsteadiness or fatigue

___ (1) Need assistance (including handrails)

___ (0) Cannot do

10a. Dyspnea

___ (4) None

___ (3) Occurs when walking

___ (2) Occurs with one or more of the following: eating, bathing, dressing (ADL)

___ (1) Occurs at rest, difficulty breathing when either sitting or lying

___ (0) Significant difficulty, considering using mechanical respiratory support

10b. Orthopnea

___ (4) None

___ (3) Some difficulty sleeping at night due to shortness of breath, does not routinely use

more than two pillows

___ (2) Needs extra pillows in order to sleep (more than two)

___ (1) Can only sleep sitting up

___ (0) Unable to sleep

10c. Respiratory insufficiency

___ (4) None

___ (3) Intermittent use of BiPAP or CPAP

___ (2) Continuous use of BiPAP or CPAP during the night

___ (1) Continuous use of BiPAP or CPAP during the night and day

___ (0) Invasive mechanical ventilation by intubation or tracheostomy

C. Questions about health and medical care

These following questions ask you about your current medical care for ALS.

1. Please name each of the medications (prescription, over the counter, or experimental) that you are (the veteran is) currently using. We are interested in medications you are using to treat ALS symptoms, and also medications you are using for other health conditions you may have.

_______________________________ _______________________________

_______________________________ _______________________________

_______________________________ _______________________________

_______________________________ _______________________________

_______________________________ _______________________________

2. Please name any dietary products, herbal products, or vitamins you are (the veteran is) currently using.

_______________________________ _______________________________

_______________________________ _______________________________

_______________________________ _______________________________

_______________________________ _______________________________

_______________________________ _______________________________

_______________________________ _______________________________

3. Are you (is the veteran) using any of the following to assist with breathing?

_____ CPAP (Continuous Positive Airway Pressure) Start date of use: (M/D/Y)__________

_____ BiPAP (Bi-level Positive Airway Pressure) Start date of use: (M/D/Y)_____________

_____ Ventilator Start date of use (M/D/Y)______________(at least 2 weeks, 15 hours per day)

_____ Trach Start date of use (M/D/Y) __________________

4. Are you (is the veteran) using a feeding tube?  YES  NO  NA

5. What is your (the veteran’s) current weight (in pounds) ______________________

If don’t know, ask for best estimate. If no idea, leave blank.

D. Questions about Previous Trauma (Ask only at baseline interview)

1. Have you (has the veteran) ever had a major physical trauma?  YES  NO

If yes, please specify the type of trauma: ______________________________________

_______________________________________________________________________

Did this trauma require hospitalization?  YES  NO

2. Have you (has the veteran) ever had any fractures?  YES  NO

E. Questions about Smoking (Ask only at baseline interview)

1. Have you (has the veteran) ever smoked cigarettes?  YES  NO If NO, stop smoking questionnaire here.

2. Have you (has the veteran) ever smoked at least 100 cigarettes (or the equivalent amount of tobacco) in your lifetime?  YES  NO

3. Have you (has the veteran) ever smoked daily?  YES  NO

4. Do you (does the veteran) now smoke daily, occasionally, or not at all?

(indicate category)________________________

If daily or occasionally, skip to Q.6

5. If “not at all”, at what age did you stop smoking? __________________________________________

6. For how many years have you smoked/did you smoke? _____________________________________

7. On the days that you (did) smoke, what was the average number of cigarettes that you smoked? ____________________________________________________________

Thank you very much for taking time to answer these questions today. We greatly appreciate your involvement in the National Registry of Veterans with ALS. We will contact you again in approximately six months to ask you this same series of questions. Should you have any questions before then, please contact us at 1-877-342-5257 (1-877-DIAL-ALS).

Ineligible Script (New diagnosis, not ALS or related MND):

Because you have received a new diagnosis that is not ALS or a related disease, we will not ask you to continue with the 6-month follow-up interviews for the Registry. Thank you very much for your participation in the Veterans ALS Registry. If you have any questions about the Registry in the future, please contact us via the toll-free ALS call line (1-877-342-5257).

VA Form	10-21047a
JUL 2006

NEW INTERVIEW Page 7