4 survey

OMB#: 0925-0584

Exp. XX/XXXX

Public reporting burden for this collection of information is estimated to average 30 minutes per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to, a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden, to: NIH, Project Clearance Branch, 6705 Rockledge Drive, MSC 7974, Bethesda, MD 20892-7974, ATTN: PRA (0925-0584). Do not return the completed form to this address.

H

CHS/SOL Informant Interview

OMB#: 0925-0584

Exp. X/XX/XXXX

ID NUMBER:

FORM CODE: IIE VERSION: A 10/20/2008

Contact Occasion

SEQ #

Administrative Information

0a. Completion Date: // 0b. Staff ID:

Instructions: The informant interview form is completed for each informant for an eligible death as determined by the HCHS/SOL event investigation worksheet.

Decedent’s name: _____________________ Informant name: __________________

Date of death: //

Age at death:

P lace of death: ___________________________

“Hello, my name is (interviewer’s name) with the HCHS/SOL study. I’m calling regarding (name of decedent) involvement with the HCHS/SOL study, a medical study in which (name of decedent) was enrolled. I want to express our condolences for your loss. We understand that you have been identified as someone who can help us close out (decedent name)’s file. I need to ask you a few questions about the circumstances surrounding (name)’s death. Would now be a good time to talk?

N o When would be convenient to call back?

Y es Thank you. If you have any questions, please ask me.

1. “Before we get started could you please tell me what was your relationship with the deceased?” (Respondent was deceased’s…)

Spouse 0

Daughter/Son 1

Parent 2

Friend 3

Workmate 4

Other relative 5 Specify: _______________

Other 6 Specify: _______________

“Now, I would like to ask you about the circumstances surrounding (insert decedent’s name) medical history.”

2. “Please tell me about his/her general health, health on the day s/he died, and about the death itself.”

Record a brief synopsis of the events surrounding the death as related by the informant:

“Some of the remaining questions may repeat information already provided, but it helps us to ask these items specifically.”

3. Where was (insert decedent name) when s/he died?

Home 0

Work 1

Public building 2

Bus or public transportation 3

In a car 4

Nursing home 5

In an emergency room 6

In an ambulance 7

In a hospital 8

Other 9

Unknown 10

3a. Was anyone present when s/he died?

No 0

Yes 1

Unknown 2

3b. If s/he died at home, was s/he found:

In bed 0

In a chair 1

On the floor 2

Elsewhere 3 specify: _________________

Unknown 4

4. Was anyone close enough to hear (insert decedent’s name) if s/he had called out?

No 0

Yes 1

Unknown 2

5. How long was it between the time (insert decedent’s name) was last known to be alive and the time s/he was found dead?

Less than 5 minutes 0

5 minutes to 1 hour 1

1 to 24 hours 2

Longer than 24 hours 3

Unknown 4

6. Please tell me who was present. (check all that apply)

Self 0 (skip to question 8)

Health care person(s) 1

Other person(s) 2

7. When was the last time you saw (insert decedent’s name) prior to his/her death?

Less than 5 minutes 0

5 minutes to 1 hour 1

1 to 24 hours 2

Longer than 24 hours 3

Unknown 4

HISTORY

The next few questions concern (insert decedent’s name) medical history.

8. Was s/he restricted to home, able to leave home only with assistance or great effort, or was his/her activity unrestricted?

Restricted to home 0

Able to leave home only with assistance or great effort 1

Unrestricted 2

9. Was s/he hospitalized within the four weeks prior to death?

No 0 Skip to question 13

Yes 1

Unknown 2 Skip to question 13

10. What was the reason for the hospitalization? (select all that apply)

Heart attack or heart disease 0

Stroke 1

Heart surgery 2

Surgical procedure (other than heart) 3

Emphysema, chronic bronchitis, or chronic

obstructive pulmonary disease (COPD) 4

Pneumonia 5

Infection 6

Other condition 7 specify: ________________

Unknown 8

11. What was the date of the hospitalization:

/ /

12. What was the name and location of the hospital?

­­­­­­­­­________________________________________

13. Was (insert decedent’s name) seen by a doctor at an emergency room or in any other facility in the last four weeks prior to death?

No 0 Skip to question 15

Yes 1

Unknown 2 Skip to question 15

13a. What was the reason for this visit to an emergency room or doctors office? (select all that apply)

Heart attack or heart disease 0

Stroke 1

Heart surgery 2

Surgical procedure (other than heart) 3

Emphysema, chronic bronchitis, or chronic

obstructive pulmonary disease (COPD) 4

Pneumonia 5

Infection 6

Other condition 7 specify: ________________

Unknown 8

14. What was the name and address of this physician or emergency room?

_____________________________________________

_____________________________________________

SYMPTOMS

“The next set of questions deals specifically with acute symptoms such as pain, discomfort that (insert decedent’s name) may have experienced at the time of his/her death.”

15. Did s/he experience pain, discomfort or tightness in the chest, left arm or jaw?

No 0 Skip to question 22

Yes 1

Unknown 2 Skip to question 22

16. Did the pain, discomfort or tightness specifically involve the chest?

No 0

Yes 1

Unknown 2

16a. Did (insert decedent’s name) ever take nitroglycerin for this pain?

No 0

Yes 1

Unknown 2

17. Were these episodes new, or had they occurred previously?

New symptoms 0 Skip to question 22

Previous symptoms 1

Unknown 2

18. Were the episodes getting longer or more frequent?

No 0

Yes 1

Unknown 2

19. Were the episodes getting more severe?

No 0

Yes 1

Unknown 2

**If No or Unknown to Questions 18 and 19, skip to Question 21**

20. Over what period of time did these episodes become longer, more frequent, or more severe?

Days 0

Weeks 1

Months 2

Unknown 3

21. Did s/he experience shortness of breath?

No 0 Skip to item 22

Yes 1

Unknown 2 Skip to item 22

21a. Did s/he have shortness of breath while at rest?

No 0

Yes 1

Unknown 2

22. “I apologize if this question sounds hard or if it makes you uncomfortable. Please be assured we respect your feelings about this unfortunate event. How long was it from (insert decedent’s name) last episode of symptoms to the time that s/he stopped breathing on his/her own?”

Less than 5 minutes 0

Less than 1 hour 1

Less than 24 hours 2

Greater than 24 hours 3

Unknown 4

EMERGENCY MEDICAL CARE

“The next few questions are concerned with emergency medical care (insert decedent’s name) may have received prior to or at the time of death. You may have already given this information in an answer to an earlier question. Since it is important to obtain information specifically on emergency medical care, I hope you don’t mind if these questions seem repetitive.”

23. Was a physician, ambulance or other emergency medical team called?

No 0 Skip to question 24

Yes 1

Unknown 2 Skip to question 24

23a. How long was it from the time the last episode of symptoms started to the time that medical assistance was called for?

5 minutes or less 0

10 minutes or less 1

1 hour or less 2

6 hours or less 3

24 hours or less 4

More than 24 hours 5

Unknown 6

23b. How long was if from the time medical care was called to the time when it arrived?

5 minutes or less 0

10 minutes or less 1

1 hour or less 2

6 hours or less 3

24 hours or less 4

More than 24 hours 5

Unknown 6

24. Were resuscitation measures, such as CPR attempted?

No 0 Skip to question 25

Yes 1

Unknown 2 Skip to question 25

24a. Who started the CPR or resuscitation?

Bystander 0

Physician 1

Ambulance personnel 2

Fireman or Police 3

The informant 4

Other 5

Unknown 6

25. Was (insert decedent’s name) taken to the hospital, emergency room or any other emergency care facility?

No 0

Yes 1

Unknown 2

26. Is there anyone else we could contact who might be able to provide additional information about the circumstances surrounding (insert decedent’s name) death or his/her usual state of health?

No 0 Skip to Closing Script

Yes 1

Unknown 2 Skip to Closing Script

27. How is s/he related to the deceased?

Spouse 0

Daughter/Son 1

Parent 2

Friend 3

Workmate 4

Other relative 5 Specify: _______________

Other 6 Specify: _______________

28. What is the name and address of this person?

___________________________________________

___________________________________________

CLOSING SCRIPT

“Thank you very much for your assistance in this study. Do you have any questions? Thanks again for your help.”

RELIABILITY

(To be completed after the interview)

29. On the basis of these questions, give your rating of reliability of the interview.

Good 0

Fair 1

Poor 2