Form 1 individual form

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-xxxx.  Public reporting burden for this collection of information is estimated to average _______ 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.  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.

OMB Number: 0915-xxxx

Expiration Date:

SICKLE CELL DISEASE TREATMENT DEMONSTRATION PROGRAM

INDIVIDUAL UTILIZATION QUESTIONNAIRE

Client ID #: |___|___|___|	Site ID #: |___|___|	Agency ID #: |___|___|___|
Today’s Date: |__|__| - |__|__| - 20 |__|__| Interviewer: ________________________	Date Client Enrolled in SCDTP: |__|__| - |__|__| - 20 |__|__|
Interview: 1 Baseline	2Follow-up
Respondent: 1Sickle Cell Client	2 Other

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

1Self report 2Data base 3Medical record

1. What is your (the client’s) date of birth? Q.1→

|__|__| - |__|__|- |__|__|__|__|

Month Day Year

1Self report 2Data base 3Medical record

2. Are you (Is the client): 1 Male 2 Female Q.2→

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

1Self report 2Data base 3Medical record

1 Hispanic 2 Non-Hispanic Q.3→

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

1 Black /African American 4 Asian

1Self report 2Data base 3Medical record

2 White 5 American Indian or Alaskan Native

3 Native Hawaiian or Other Pacific Islander Q.4 →

4b. Are you (is the client):

1Self report 2Data base 3Medical record

1 Mediterranean

2 Middle Eastern

-7 DOES NOT APPLY Q.4b →

1Self report 2Data base 3Medical record

5. 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Data base 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Data base 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. What was your household yearly income from January 1, 2007 through

December 31, 2007? Please include all

1Self report 2Data base 3Medical record

sources of income.

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

2Data base 3Medical record

Sickle-Hemoglobin C Disease (SC) 2 2

Sickle Beta-Plus Thalassemia 3 3

Sickle Beta-Zero Thalassemia 4 4 Q.9b→

Other → 9c. Specify: _____________ 5 5

DON’T KNOW -8 -8

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

1Self report 2Data base 3Medical record

1 NEWBORN SCREENING 2 OTHER → 10a. Specify Age: |___|___|

-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. Let’s start by asking about visits to a primary health care provider

1

1Self report 2Data base 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.13 2 NO

1

1Self report 2Data base 3Medical record

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

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

13. In the past 12 months, how many times have you (has the client) gone

1Self report 2Data base 3Medical record

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Data base 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Data base 3Medical record

1 Yes→ SKIP TO Q.16 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Data base 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

1Self report 2Data base 3Medical record

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

health care services at a hospital emergency department?

Q. 17 →

|___|___|

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

1 Yes 2 No → SKIP TO Q.19

For each hospitalization, please tell me the number of nights and the reason you were

(the client was) in the hospital.

18a. Hospital Stay 18b. # of nights 18c. Reason

#1 |___|___| __________________________

1Self report 2Data base 3Medical record

__________________________

#2 |___|___| __________________________

__________________________ Qs. 18, a-c →

#3 |___|___| __________________________

__________________________

#4 |___|___| __________________________

__________________________

#5 |___|___| __________________________

__________________________

1Self report 2Data base 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Data base 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).

SELF-REPORT |___|___| . |___| -8DON’T KNOW

DATABASE/MEDICAL RECORD |___|___| . |___| -9 NO ACCESS TO DATABASE/MEDICAL RECOR

22. BASELINE: Have you ever (Has the client) 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Data base 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

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:__________________________________

2

1Self report 2Data base 3Medical record

3. BASELINE: Have you (has the client) ever been given regular, scheduled

blood transfusions?

FOLLOW-UP: In the past 12 months, have you (has the client) been given

regular, scheduled blood transfusions? Q. 23 →

1 Yes 2 No

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Data base 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Data base 3Medical record

1 Yes→ SKIP TO Q.25 2 No

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

__________________________________________________

__________________________________________________

SKIP TO Q.27

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Data base 3Medical record

26a. 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

YES NO KNOW APPLICABLE

a. Developmental screening to monitor infant’s/

child development in areas of communication,

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

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

c. Hearing and vision screening in the last year? 1 2 -8 -7

d. Diabetes screening in the last year? 1 2 -8 -7

e. Blood pressure check in the last year? 1 2 -8 -7

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

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

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

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

j. TCD (Transcranial Doppler) 1 2 -8 -7

1Self report 2Data base 3Medical record

Qs. 27a-j →

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. Are you (Is the client) up-to-date with the following vaccinations?

Yes No Unknown

1Vaccination Card 2Data base 3Medical record

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

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

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

(4) Pneumococcal Polysaccharide Vaccine 1 2 -8

(5) Influenza 1 2 -8

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

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

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

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

(10) Varicella 1 2 -8

(11) Rotavirus (Rota) 1 2 -8

(12) Haemophilus influenzae type b (Hib) 1 2 -8

FOR CLIENTS AGED 7 TO 18 YEARS

28b. Are you (Is the client) up-to-date with the following vaccinations?

1Vaccination Card 2Data base 3Medical record

Yes No Unknown

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

(2) Meningococcal (MCV4 or MPSV4) 1 2 -8 Q28b →

(3) Pneumococcal Polysaccharide Vaccine 1 2 -8

(4) Influenza 1 2 -8

(5) Hepatitis A (Hep A) 1 2 -8

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

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

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

(9) Varicella 1 2 -8

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

FOR CLIENTS AGED 19 YEARS AND OLDER

28c. Are you (Is the client) up-to-date with the following vaccinations?

1Vaccination Card 2Data base 3Medical record

Yes No Unknown

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

(2) Meningococcal (MCV4 or MPSV4) 1 2 -8 Q28c →

(3) Pneumococcal Polysaccharide Vaccine 1 2 -8

(4) Influenza 1 2 -8

(5) Hepatitis A (Hep A) 1 2 -8

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

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

(8) Varicella 1 2 -8

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

(10) Zoster 1 2 -8

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Version July 15, 2008