Form 3 Utilization Data Form

OMB Number: 0915-0344

Expiration Date: 12/31/2014

SICKLE CELL DISEASE TREATMENT DEMONSTRATION PROGRAM

INDIVIDUAL UTILIZATION QUESTIONNAIRE

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 0915-0344. 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.

Subject ID Label:		Site: _______________________________
Today’s Date: |__|__| - |__|__| - 20 |__|__| Data Collector: _____________________	Date Client Enrolled: |__|__| - |__|__| - 20 |__|__|
Interview: 1 Baseline 2 Follow-up	Respondent: Sickle Cell Client 2Other 3Both

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 data base, and/or (3) the client’s medical records.

Baseline Interview Only [FOR FOLLOW-UP BEGIN WITH QUESTION 4

1Self report 2Database 3Medical record

1. Age of client at time of interview: Q.1→

_____ years ______ months

1Self report

2. Are you/Is the client: 1 Male 2 Female Q2. →

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

1Self report

1 Hispanic 2 Non-Hispanic Q.3→

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

1Self report

1 Black /African American 4 Asian Q.4 →

2 White 5 American Indian or Alaskan Native

3 Native Hawaiian or Other Pacific Islander

5

1Self report 2Database 3Medical record

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

|___|___| Q.5 →

6. What is the highest grade of school that (you/the client) completed?

1Self report 2Database 3Medical record

0 Not school age 6 Post-High School Training other

1 Currently in Grade School than College (Vocational, Technical, etc)

2 Currently in Middle School 7 Some College Q.6 →

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

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

1Self report 2Database 3Medical record

1 Medicaid 5 Medicare HMO

2 State Children’s Health Insurance Plan (SCHIP) 6 Private

3 Medicaid HMO 7 No insurance Q.7 →

4 Medicare 8 Other↓

-8 DON’T KNOW 7a. Specify: _________________

8. 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Self report 2Database 3Medical record

1 Less than $5,000 8 $50,000 - $59,999 Q.8→

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

9. 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

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

1Self report 2Database 3Medical record

1 NEWBORN SCREENING 2 OTHER → 10a. Specify Age: |___|___| year(s) old

-8 DON’T KNOW Q.10 →

-9 REFUSED

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.

1

1Self report 2Database 3Medical record

1. 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? |___|___| Q.11a, b →

b. Non Sickle cell-related problems? |___|___|

11c. Is (your/client’s) primary health care provider also (your/his/her)

sickle cell specialist?

1 YES→ SKIP TO Q.11 2 NO

1Self report 2Database 3Medical record

12. 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. Sickle cell-related problems? |___|___| Qs. 12a, b →

b. Non Sickle cell-related problems? |___|___|

1

1Self report 2Database 3Medical record

3. 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? |___|___| Qs. 13a, b →

b. Non Sickle cell-related problems? |___|___|

1

1Self report 2Database 3Medical record

4. In the past 12 months, did (you/the client) receive a referral

for an eye examination?

1 Yes 2 No Q.14 →

15. In the past 12 months, did (you /the client) make an appointment

for an eye examination?

1Self report 2Database 3Medical record

1 Yes→ SKIP TO Q.14 2 No

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

______________________________________________

______________________________________________

______________________________________________

SKIP TO Q.17

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

1Self report 2Database 3Medical record

1 Yes→ SKIP TO Q.17 2 No Qs. 16, a →

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

_____________________________________

_____________________________________

_____________________________________

1Self report 2Database 3Medical record

17. In the past 12 months, how many times did (you/the client) receive

health care services at a hospital emergency department Qs. 17, a →

|___|___|

1

1Self report 2Database 3Medical record

8. 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 18c. Reason

#1 |___|___| __________________________

__________________________

#2 |___|___| __________________________

__________________________

#3 |___|___| __________________________

__________________________

#4 |___|___| __________________________

__________________________

#5 |___|___| __________________________

__________________________

1Self report 2Database 3Medical record

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

1 Yes → SKIP TO Q.21 2 No Q.19 →

1Self report

2Database 3Medical record

20. In the past 12 months has (your/client’s) physician discussed hydroxyurea

therapy as an option for (you/the client)? Q.20→

1 Yes 2 No

21. What is (your/client’s) baseline hemoglobin level? (COLLECT SELF-REPORT RESPONSE

AND VERIFY WITH DATABASE OR MEDICAL RECORD).

a. Self-Report b. Database/Medical Record

|___|___| . |___| |___|___| . |___|

-8 DON’T KNOW -9 NO ACCESS TO DATABASE/MEDICAL RECORD

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?

Yes No Don’t Know

1Self report 2Database 3Medical record

a. Pain 1 2 -8

b. Sickling in the lungs 1 2 -8 Q.22a-n →

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 -7 N/A

k. Hand-foot syndrome 1 2 -8

l. Spleen problems 1 2 -8
m. Seizures 1 2 -8

n. Other 1↓ 2 -8

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Self report 2Database 3Medical record

1 Yes 2 No Q. 23 →

24. BASELINE: (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?

1Self report 2Database 3Medical record

Yes No Don’t Know

a. SCD complications 1 2 -8 Q. 24a, b →

b. Inheritance of SCD 1 2 -8

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

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

1Self report 2Database 3Medical record

1 Yes→ SKIP TO Q.26 2 No

21a. Why isn’t the client taking prophylactic antibiotics? Qs. 25, a →

__________________________________________________

__________________________________________________

SKIP TO Q.23

26. At what age did the client start taking prophylactic antibiotics?

|___|___| 1 weeks 3 years 2 months -8 Don’t know

1Self report 2Database 3Medical record

22a. How often is the client taking prophylactic antibiotics?

1 2 times per day Qs. 26, a →

2 1 time per day

3 Less than 1 time per day

27. (Have you/Has the client) had:

DON’T NOT

For children only: YES NO KNOW APPLICABLE

a. Developmental screening to monitor infant’s/

child development in areas of communication, Qs. 27a-j

1Self report 2Database 3Medical record

motor, social, problem-solving and self-help skills? 1 2 -8 -7

For all participants:

b. A dental exam in the last year? 1 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) in the last year? 1 2 -8 -7

For adults only:

e. A mammogram in the in last 2 years? 1 2 -8 -7

f. A pap smear in the last 3 years? 1 2 -8 -7

g. Colon screening in the last 10 years? 1 2 -8 -7

h. A PSA Test? 1 2 -8 -7

THE FOLLOWING INFORMATION SHOULD BE OBTAINED ONLY FROM A VACINATION CHART, CLIENT DATA BASE 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: NOT

YES NO UNKNOWN APPLICABLE

1Vaccination Card 2Database 3Medical record

(1) Diphtheria, Tetanus, Pertussis (DTaP) 1 2 -8 -7

(2) Meningococcal (MCV4 or MPSV4)) 1 2 -8 -7

(3) Pneumococcal Conjugate Vaccine 1 2 -8 -7 Q28a →

(4) Pneumococcal Polysaccharide Vaccine 1 2 -8 -7

(5) Influenza 1 2 -8 -7

(6) Hepatitis A (Hep A) 1 2 -8 -7

(7) Hepatitis B (Hep B) 1 2 -8 -7

(8) Inactivated Poliovirus (IPV) 1 2 -8 -7

(9) Measles, Mumps, Rubella (MMR) 1 2 -8 -7

(10) Varicella 1 2 -8 -7

(11) Rotavirus (Rotateq) 1 2 -8 -7

(12) Haemophilus influenza type b (Hib) 1 2 -8 -7

FOR CLIENTS AGED 7 TO 18 YEARS

2

1Vaccination Card 2Database 3Medical record

8b. INDICATE WHETHER OR NOT THE CLIENT IS UP-TO-DATE WITH THE FOLLOWING VACCINATIONS: NOT

YES NO UNKNOWN APPLICABLE

(1) Diphtheria, Tetanus, Pertussis (Tdap) 1 2 -8 -7

(2) Meningococcal (MCV4 or MPSV4)) 1 2 -8 -7

(3) Pneumococcal Polysaccharide Vaccine 1 2 -8 -7

(4) Influenza 1 2 -8 -7

(5) Hepatitis A (Hep A) 1 2 -8 -7 Q28b →

(6) Hepatitis B (Hep B) 1 2 -8 -7

(7) Inactivated Poliovirus (IPV) 1 2 -8 -7

(8) Measles, Mumps, Rubella (MMR) 1 2 -8 -7

(9) Varicella 1 2 -8 -7

(10) Human Papillomavirus (HPV) 1 2 -8 -7

FOR CLIENTS AGED 19 YEARS AND OLDER

28c. INDICATE WHETHER OR NOT THE CLIENT IS UP-TO-DATE WITH THE FOLLOWING VACCINATIONS:

NOT

YES NO UNKNOWN APPLICABLE

1Vaccination Card 2Database 3Medical record

(1) Diphtheria, Tetanus, Pertussis (Td/Tdap) 1 2 -8 -7

(2) Meningococcal (MCV4 or MPSV4)) 1 2 -8 -7

(3) Pneumococcal Polysaccharide Vaccine 1 2 -8 -7

(4) Influenza 1 2 -8 -7

(5) Hepatitis A (Hep A) 1 2 -8 -7 Q28c →

(6) Hepatitis B (Hep B) 1 2 -8 -7

(7) Measles, Mumps, Rubella (MMR) 1 2 -8 -7

(8) Varicella 1 2 -8 -7

(9) Human Papillomavirus (HPV) 1 2 -8 -7

(10) Zoster 1 2 -8 -7

8

Edited: March 2012