Form EDITED 8-29-11 EDITED 8-29-11 Attach_E_Individual Utilization Data Form_Mar2010 - EDIT

OMB Number: 0915-0320
Expiration Date: 10/31/2010
Public Burden Statement: 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. The OMB control number for this
project is 0915-0320. Public reporting burden for this collection of information is estimated to average 90 minutes per
respondent annually, including the time for reviewing instructions, searching existing data sources, gathering and
maintaining the data needed, and completing and reviewing the collection of information. The estimated amount of
time to complete this form is 30 minutes. Send comments regarding this burden estimate or any other aspect of this
collection of information, including suggestions for reducing this burden, to HRSA Reports Clearance Officer, 5600
Fishers Lane, Room 14-33, Rockville, Maryland, 20857.

SICKLE CELL DISEASE TREATMENT DEMONSTRATION PROGRAM

INDIVIDUAL UTILIZATION QUESTIONNAIRE
Site: _______________________________

Subject ID Label:

Today’s Date: |__|__| - |__|__| - 20 |__|__|

Date Client Enrolled: |__|__| - |__|__| - 20 |__|__|

Data Collector: _____________________
Interview:

Baseline

1

Respondent:

Follow-up

2

1

Sickle Cell Client

2

Other

3

Both

FOR EACH QUESTION, PLEASE INDICATE WHETHER THE INFORMATION WAS OBTAINED FROM (1) SELF-REPORT
BY THE SICKLE CELL CLIENT OR HIS/HER PROXY (E.G., CAREGIVER), (2) A CLIENT DATABASE, AND/OR (3) THE
CLIENT’S MEDICAL RECORDS.
Baseline Interview Only [FOR FOLLOW-UP Æ BEGIN WITH QUESTION 5]

Self report
2Database
3Medical record

1

1.

What is (your/the client’s) date of birth?

Q.1→

|__|__| - |__|__|- |__|__|__|__|
Month

Day

Year

2.

(Are you/Is the client):

3.

What is (your/the client’s) ethnic background?
1

4.

Hispanic

1

2

Male

2

Female

Q.2→

Non-Hispanic

Q.3→

What is (your/the client’s) race? (MARK ALL THAT APPLY)
1

Black /African American

4

Asian

2

White

5

American Indian or Alaskan Native

3

Native Hawaiian or Other Pacific Islander

Version: March 2010

Q.4 →

Self report
2Database
3Medical record

1

Self report
2Database
3Medical record

1

Self report
2Database
3Medical record

1

1

5.

Including (yourself/the client), how many people live in the household?

|___|___|
6.

7.

What is the highest grade of school that (you/the client) completed?
Not school age

1

Currently in Grade School

2

Currently in Middle School

7

Some College

3

Currently in High School

8

Graduated from College

4

Less than High School Graduate or GED

9

Post-Graduate

5

High School Graduate or GED

9.

Post-High School Training other

6

than College (Vocational, Technical, etc)
Q.6 →

Self report
2Database
3Medical record

1

What type(s) of medical insurance (do you/does the client) have? (CHECK ALL THAT APPLY)
1

Medicaid

5

Medicare HMO

2

State Children’s Health Insurance Plan (SCHIP)

6

Private

3

Medicaid HMO

7

No insurance

4

Medicare

8

Other↓

-8

8.

Q.5 →

0

Self report
2Database
3Medical record

1

Self report
2Database
3Medical record

1

Q.7 →

7a. Specify: _________________

DON’T KNOW

Please use this card (GIVE INCOME CARD) and tell me the number 1 through 11
that best represents your household yearly income from January 1st through
December 31st of last calendar year, (SAY APPROPRIATE YEAR).
Please include all sources of income.
1

Less than $5,000

8

$50,000 - $59,999

2

$5,000 - $9,999

9

$60,000 – $79,999

3

$10,000 - $14,999

10

$80,000 – $94,999

4

$15,000 – $19,999

11

$95,000 and over

5

$20,000 – $29,999

-8

DON’T KNOW

6

$30,000 - $39,999

-9

REFUSED

7

$40,000 – $49,999

Q.8→

Self report
2Database
3Medical record

1

What type of Sickle Cell Disease (do you/does the client) have? (COLLECT SELF-REPORT
RESPONSE AND VERIFY WITH DATABASE OR MEDICAL RECORD)
a. Self-Report

b. Database/Medical Record

Sickle Cell Disease (SS) ..........................................

1

1

Sickle-Hemoglobin C Disease (SC).........................

2

2

Sickle Beta-Plus Thalassemia ..................................

3

3

Sickle Beta-Zero Thalassemia .................................

4

4

Other → 9c. Specify: _____________ .............

5

5

DON’T KNOW ............................................................ -8

-8

Version: March 2010

2

10.

At what age did (you/the client) first find out that (you have/the client has) Sickle Cell Disease?
1

NEWBORN SCREENING

-8

DON’T KNOW

-9

REFUSED

2

OTHER → 10a. Specify Age: |___|___| year(s) old
Q.10 →

Self report
2Database
3Medical record

1

We are interested in the health care that you receive from a variety of sources. These next questions ask about
visits to a primary health care provider, a sickle cell specialist, other medical specialists, and a hospital emergency
department.
11.

In the past 12 months, how many times (have you/has the client)
gone to a primary health care provider for:
a.

Sickle cell-related problems?

|___|___|

b.

Non Sickle cell-related problems?

|___|___|

Qs.11a, b →

Self report
2Database
3Medical record

Qs.12a, b →

Self report
2Database
3Medical record

1

11c. Is (your/client’s) primary health care provider also (your/his/her)
sickle cell specialist?
1

12.

14.

No

Sickle cell-related problems?

|___|___|

b. Non-Sickle cell-related problems?

|___|___|

1

In the past 12 months, how many times (have you/has the client) gone
to another type of specialist for:
a.

Sickle cell-related problems?

|___|___|

b.

Non-Sickle cell-related problems?

|___|___|

In the past 12 months, did (you/the client) receive a referral
for an eye examination?
1

15.

2

In the past 12 months, how many times (have you/has the client) gone
to a sickle cell specialist (if not your primary care physician) for:
a.

13.

Yes→ SKIP TO Q.13

Yes

2

Qs.13a, b →

Q.14 →

No

In the past 12 months, did (you/the client) make an appointment
for an eye examination?
1

Yes→ SKIP TO Q.16

2

No

Self report
2Database
3Medical record
1

Self report
2Database
3Medical record
1

Qs.15, a →

Self report
2Database
3Medical record

Qs.16, a →

Self report
2Database
3Medical record

1

15a. Why wasn’t an appointment made for an eye examination?

_______________________________________________________
_______________________________________________________
SKIP TO Q.17
16.

Did (you/the client) go to the eye appointment?
1

Yes→ SKIP TO Q.17

2

No

1

16a. Why didn’t (you/the client) go to the appointment?

____________________________________________________________
____________________________________________________________
Version: March 2010

3

17.

In the past 12 months, how many times did (you/the client) receive
health care services at a hospital emergency department?

Q.17 →

|___|___|
18.

Self report
2Database
3Medical record
1

In the past 12 months, (were you/was the client) admitted to the hospital?
1

Yes

2

No → SKIP TO Q.19

Qs.18, a-c →

For each hospitalization, please tell me the number of nights and the reason ) you were/
the client was) in the hospital. (LIST ADDITIONAL STAYS ON BACK OF PAGE)
18a. Hospital Stay

18b. # of nights

|___|___|

#1

18c.

Reason

Self report
2Database
3Medical record
1

__________________________
__________________________

|___|___|

#2

__________________________
__________________________

|___|___|

#3

__________________________
__________________________

|___|___|

#4

__________________________
__________________________

|___|___|

#5

__________________________
__________________________

19.

(Are you/is the client) currently taking hydroxyurea therapy?
1

20.

2

No

In the past 12 months has (your/client’s) physician discussed hydroxyurea
therapy as an option for (you/the client)?
1

21.

Yes → SKIP TO Q.21

Yes

2

Self report
2Database
3Medical record
1

Q.19 →

Q.20 →

No

Self report
2Database
3Medical record
1

What is (your/client’s) baseline hemoglobin level? (COLLECT SELF-REPORT
RESPONSE AND VERIFY WITH DATABASE OR MEDICAL RECORD).
a. Self-Report

|___|___| . |___|
-8

DON’T KNOW

Version: March 2010

b. Database/Medical Record

|___|___| . |___|
-9

NO ACCESS TO DATABASE/MEDICAL RECORD

4

22.

BASELINE:

(Have you/Has the client) ever had the following Sickle Cell complications?

FOLLOW-UP: In the past 12 months, (have you/has the client) had the following Sickle Cell
complications?
No

Yes

DON’T KNOW

a.

Pain ............................... 1

2

-8

b.

Sickling in the lungs ..... 1

2

-8

c.

Fever ............................. 1

2

-8

d.

Severe infection ............ 1

2

-8

e.

Stroke ............................ 1

2

-8

f.

Kidney damage ............. 1

2

-8

g.

Leg ulcers ..................... 1

2

-8

h.

Sickle eye damage ....... 1

2

-8

i.

Gall bladder attack ....... 1

2

-8

j.

Priapism ........................ 1

2

-8

k.

Hand-foot syndrome ..... 1

2

-8

l.

Spleen problems............ 1

2

-8

m. Seizures ........................ 1

2

-8

2

-8

n.

Other ............................ 1

↓

Qs.22a-n →

-7

Self report
2Database
3Medical record
1

N/A

Please Specify: __________________________________
__________________________________

23.

BASELINE:

(Have you/Has the client) ever been given regularly scheduled
blood transfusions?

FOLLOW-UP: In the past 12 months, (have you/has the client) been given
regularly scheduled blood transfusions?
1

24.

BASELINE:

Yes

2

Q.23 →

No

Self report
2Database
3Medical record
1

(Have you/Has the client) ever been counseled on the following?

FOLLOW-UP: In the past 12 months, (have you/has the client) been counseled on the following?
Yes

No

DON’T KNOW

a.

SCD complications

1

2

-8

b.

Inheritance of SCD

1

2

-8

Version: March 2010

Self report
2Database
3Medical record
1

Qs.24a, b →

5

IF CLIENT IS 6 YEARS OR OLDER, SKIP TO Q. 27
25.

Is the client taking prophylactic antibiotics (i.e., penicillin)?
1

Yes→ SKIP TO Q.26

2

Self report
2Database
3Medical record
1

No

Qs.25, a →

25a. Why isn’t the client taking prophylactic antibiotics?

__________________________________________________
__________________________________________________
SKIP TO Q.27
26.

At what age did the client start taking prophylactic antibiotics?

|___|___|

1

weeks

2

months

3

years

DON’T KNOW

-8

26a. How often is the client taking prophylactic antibiotics?

27.

1

2 times per day

2

1 time per day

3

Less than 1 time per day

Qs.26, a →

Self report
2Database
3Medical record
1

(Have you/Has the client) had:
For children only:
YES
a. Developmental screening to monitor infant/ child
development in areas of communication, motor,
social, problem-solving and self-help skills? ............... 1

NO

DON’T
NOT
KNOW APPLICABLE
Qs.27a-j

2

-8

-7

2

-8

-7

c.

Hearing screening in the last year? ............................. 1

2

-8

-7

d.

Vision screening in the last year? ............................... 1

2

-8

-7

e.

Diabetes screening in the last year? ............................. 1

2

-8

-7

f.

Blood pressure check in the last year? ........................ 1

2

-8

-7

g.

TCD (Transcranial Doppler)? ..................................... 1

2

-8

-7

For adults only:
h. A mammogram in the in last 2 years? .........................1

2

-8

-7

i.

A pap smear in the last 3 years? .................................. 1

2

-8

-7

j.

Colon screening in the last 10 years? ...........................1

2

-8

-7

k.

A PSA Test? ................................................................ 1

2

-8

-7

Version: March 2010

Self report
2Database
3Medical record
1

For all participants:
b. A dental exam in the last year? ................................... 1

6

THE FOLLOWING INFORMATION SHOULD BE OBTAINED ONLY FROM A VACCINATION
CHART, CLIENT DATABASE OR CLIENT MEDICAL RECORD.
FOR CLIENTS AGED 6 YEARS AND YOUNGER:
28a. INDICATE WHETHER OR NOT THE CLIENT IS UP-TO-DATE WITH THE FOLLOWING VACCINATIONS:
YES

(1) Diphtheria, Tetanus, Pertussis (DTaP) .......... 1
(2) Meningococcal (MCV4 or MPSV4) ............. 1
(3) Pneumococcal Conjugate Vaccine ............... 1
(4) Pneumococcal Polysaccharide Vaccine ........ 1
(5) Influenza ........................................................ 1
(6) Hepatitis A (Hep A) ..................................... 1
(7) Hepatitis B (Hep B) ...................................... 1
(8) Inactivated Poliovirus (IPV) ......................... 1
(9) Measles, Mumps, Rubella (MMR) ............... 1
(10) Varicella ........................................................ 1
(11) Rotavirus (Rota) ........................................... 1
(12) Haemophilus influenzae type b (Hib)............ 1

NO

NOT
UNKNOWN APPLICABLE

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

Q.28a →

Vaccination Card
2Database
3Medical record

1

FOR CLIENTS AGED 7 TO 18 YEARS:
28b. INDICATE WHETHER OR NOT THE CLIENT IS UP-TO-DATE WITH THE FOLLOWING VACCINATIONS:
YES

(1) Diphtheria, Tetanus, Pertussis (Tdap) .......... 1
(2) Meningococcal (MCV4 or MPSV4) .......... 1
(3) Pneumococcal Polysaccharide Vaccine......... 1
(4) Influenza ........................................................ 1
(5) Hepatitis A (Hep A) ....................................... 1
(6) Hepatitis B (Hep B) ....................................... 1
(7) Inactivated Poliovirus (IPV) .......................... 1
(8) Measles, Mumps, Rubella (MMR) ................ 1
(9) Varicella ........................................................ 1
(10) Human Papillomavirus (HPV) ...................... 1

NO

NOT
UNKNOWN APPLICABLE

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

Vaccination Card
2Database
3Medical record

1

Q.28b →

FOR CLIENTS AGED 19 YEARS AND OLDER:
28c.

INDICATE WHETHER OR NOT THE CLIENT IS UP-TO-DATE WITH THE FOLLOWING VACCINATIONS:
YES

(1) Diphtheria, Tetanus, Pertussis (Td/Tdap) .. 1
(2) Meningococcal (MCV4 or MPSV4) .......... 1
(3) Pneumococcal Polysaccharide Vaccine ..... 1
(4) Influenza .................................................... 1
(5) Hepatitis A (Hep A) ................................... 1
(6) Hepatitis B (Hep B) ................................... 1
(7) Measles, Mumps, Rubella (MMR) ............ 1
(8) Varicella..................................................... 1
(9) Human Papillomavirus (HPV) .................. 1
(10) Zoster ......................................................... 1
Version: March 2010

NO

NOT
UNKNOWN APPLICABLE

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

2

-8

-7

Vaccination Card
2Database
3Medical record

1

Q.28c →

7