1 Sickle Cell Disease

Attachment B - The Minimum Database Project (MDP) Sickle Cell Disease (SCD) Questionnaire

OMB Number: xxxx-xxxx

Expiration Date:

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 45 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.

Sickle Cell Disease Newborn Screening Program (SCDNBSP)

Minimum Database Project (MDP)

Sickle Cell Disease (SCD) Questionnaire Form

Section A: SITE IDENTIFYING INFORMATION

Today’s Date (mm/dd/yyyy): |__|__| - |__|__| - 20|__|__|

Date of Client Visit/Interview (mm/dd/yyyy): |__|__| - |__|__| - 20|__|__|

Data Entry Personnel: ____________________________ Site ID: |__|__|__| State ID: |__|__|

Section B: CLIENT IDENTIFYING INFORMATION

Date of Birth (mm/dd/yyyy): |__|__| - |__|__| - |__|__|__|__| Client ID: |__|__|__|__|__|

Is this client a newborn? (0-2 months): Yes No

Section C: CLIENT INFORMATION

1. Who referred the client? (Please check one)

State Newborn Screening (NBS) Program Health Department (not a NBS Program)

Physician Self-Referral

Hospital Comprehensive Sickle Cell Center

Community-Based Organization Other: ­­­­­___________________________

2. What is the sex of the client? (Please click one) Male Female

3. What is the confirmed diagnosis of the client? (Please click one )

Sickle Cell Disease (SS) Sickle C Disease (SC)

Sickle Beta-Plus Thalassemia Sickle Beta-Zero Thalassemia Other__________

4. How old was the client at the time of confirmatory diagnosis? (Enter date of diagnosis)

Date (mm/dd/yyyy): |__|__| - |__|__| - |__|__|__|__|

5. Enter the source of the confirmatory diagnosis: (Please check one)

Caregiver Physician Lab Other:__________

6. W

   Section D: FAMILY INFORMATION

   ho is the primary caregiver(s)? (Please click one)

Mother only Father Only Both Parents Foster Parents

Other Family Grandparent (s) Other: _______________________

7. If mother is the primary caregiver, does she know about her hemoglobin status (SCD or SCT)? (Please check one) Yes No Not Applicable

8. If yes, when did the mother know about her status? (Please check one)

Before pregnancy During pregnancy After birth of child Not Applicable

9. If no, has she been asked to be tested? (Please check one) Yes No Not Applicable

10. If father is the primary caregiver, does he know about his hemoglobin status (SCD or SCT)? (Please check one) Yes No Not Applicable

11. If yes, when did the father know about his status? (Please check one)

Before pregnancy During pregnancy After birth of child Not Applicable

12. If no, has he been asked to be tested? (Please check one) Yes No Not Applicable

13. What is the age of the primary caregiver(s)? |__|__| |__|__|

14. Is the client genetically related (mother, father etc) to the primary caregiver(s)? Yes No

15. How many more children (< 18 years old) are there in the client’s home with SCD/SCT? |__|__|

16. What is the diagnosis of other child/children? ____________________________________

17. How many people are in the client’s household (including the client and caregiver): |__|__|

18. Zip code of primary caregiver(s): |__|__|__|__|__|

19. What is annual household income of the client’s family? (Please check one)

Less than $10,000 $10,000 – $19,999 $20,000 – $29,999

$30,000 – $39,999 $40,000 – $49,999 $50,000 – $59,999

$60,000 – $74,999 $75,000 and over Did not answer

Don’t Know

20. What type of insurance does the caregiver have for the client? (Please click one)

Medicaid Medicaid HMO Private No Insurance SCHIP Medicare

TRICARE Other: ______________________

Section E: CLIENTS RECENT MEDICAL HISTORY

21. Where does the client go for primary care? (Please click all that apply)

Private Practitioner’s Office Hospital ER/ED Urgent Care Center

Community Health Center Hospital-based Clinic Public Health Department

Other: ______________________________________

22. Whom does the client see for primary care at the above site? (Please click all that apply)

Pediatrician Hematologist Internist

Nurse Practitioner Family Doctor Other: __________________

23. Has the client seen a hematologist in the past year? Yes No

24. In the past 3 months, how many times has the client received healthcare services at an ED? |__|

25. What was/were the reasons(s) for the visit? (Please check all that apply)

Fever Pain Respiratory Problems

Jaundice Pallor Lethargy

Enlarged Spleen Priapism Vomiting/Nausea

Swollen Limbs Other: _________________ Not Applicable

26. In the past 3 months, how many times has the client been admitted to the hospital? |__|

27. What was/were the reasons(s) for the visit? (Please check all that apply)

Fever Pain Respiratory Problems

Jaundice Pallor Lethargy

Enlarged Spleen Priapism Vomiting/Nausea

Swollen Limbs Other: _________________ Not Applicable

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

Yes No (why): ____________________________

29. If yes, at what age was prophylactic penicillin started? (Please check one)

1 Week 2 Weeks 3 Weeks 4 Weeks 5 Weeks

6 Weeks 7 Weeks 8 Weeks 3 Months 4 Months

Greater than 4 Months – 2 Years Don’t Know Not Applicable

30. How often is the client taking prophylactic antibiotics? (Please click one)

2 times per day 1 time per day Less than 1 time per day

31. Has the client received the pneumococcal vaccine? Yes No

32. If yes, what type? (Please check one)

7 Valent (i.e. Prevnar as part of childhood immunizations) 23 Valent (i.e. Pneumovax)

Not Applicable Don’t Know Did Not Answer

33. In the last 3 months, what treatment(s) has the client received? (Please check all that apply)

Nebulizer/Inhaler Transfusions Transcranial Doppler (TCD) Chelation Therapy

Hydroxyurea None of these services

Section F: SERVICES CLIENTS FAMILY RECEIVED

34. During the past 3 months, # of genetic counseling sessions attended? |__|__|

35. During the past 3 months, # of referrals has the client or caregiver received? |__|__|

36. During the past 3 months, # of other services (ex: interpreter, transportation etc.) has the client or caregiver received? |__|__|

Section G: CLIENT FAMILY COMMUNICATION
37. For Caregivers of clients under age 18	37. For Clients 18 years or older
The following questions pertain to clients under the age of 18 years and their caregivers. (Language categories provided below.) What is the primary spoken language in the client’s home? _________________________ If English is not your primary language do you require a translator for medical services/medical information? Yes No Not Applicable What, if any, is the secondary spoken language? ________________________ What language is the client/caregiver most comfortable reading? Client: . Don’t Know Not Applicable Caregiver: . What is highest level of education attained? Caregiver: . Don’t Know Not Applicable Continue to questions 38 and 39	The following questions pertain to the client 18 years of age or older. (Language categories provided below.) What is the primary spoken language in the client’s home? ____________________________ If English is not your primary language do you require a translator for medical services/medical information? Yes No Not Applicable What, if any, is the secondary spoken language? _________________________ What language are you most comfortable reading? _______________________________ What is the highest level of education you attained? _______________________________ Continue to questions 38 and 39
*Language categories: American Sign Language, Arabic, Chinese, Haitian Creole, Igbo, Korean, Somali, Spanish, Vietnamese, Yoruba or please provide any other language not listed.
Are you (your child) Hispanic or Latino? No, not Hispanic or Latino Yes, Hispanic or Latino What is your (your child’s) race? Mark (X) one or more boxes. White Black or African American American Indian or Alaska Native Asian Native Hawaiian or Other Pacific Islander