Form EDITED 8-29-11 EDITED 8-29-11 Attach_E_Individual Utilization Form_March 2010 EDITED 8

Sickle Cell Disease Program Evaluations

Individual Utilization Data Form_Mar2010 - EDITED 8-29-111-1

Sickle Cell Disease Treatment Demonstration Program (SCDTDP) Utilization Questionnaire (pre-demonstration)

OMB: 0915-0344

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OMB Number: 0915-0320
Expiration Date: 10/31/2010
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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


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File TitleSICKLE CELL DISEASE TREATMENT DEMONSTRATION PROGRAM
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File Created2010-03-31

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