1 SCD Questionnaire Form

Sickle Cell Disease Program Evaluations

Clean Minimum Database Project SCD Questionnaire Form_4_5_12

Sickle Cell Disease and Newborn Screening Program (SCDNBSP) Evaluation - MDP SCD Questioniare

OMB: 0915-0344

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OMB Number: 0915-0344

Expiration Date: 12/31/2014





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 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





Age of client at time of interview:______ years ______ months Client ID: |__|__|__|__|__|







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: ­­­­­___________________________

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


  1. 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__________



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



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



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



Caregiver Physician Lab Other:__________







  1. 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: _______________________



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

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



Before pregnancy During pregnancy After birth of child Not Applicable



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

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

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



Before pregnancy During pregnancy After birth of child Not Applicable



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



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



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



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



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



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



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



  1. 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

  1. 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



  1. 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: ______________________________________



  1. 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: __________________

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



  1. In the past 12 months, how many times has the client received healthcare services at an ED? |__|



  1. 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



  1. In the past 12 months, how many times has the client been admitted to the hospital? |__|



  1. 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



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



Yes No (why): ____________________________



  1. 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



  1. 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

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

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



7 Valent/13 Valent (i.e. Prevnar as part of childhood immunizations) 23 Valent (i.e. Pneumovax)



Both 7/13 Valent and 23 Valent Pneumococcal vaccine Not Applicable Don’t Know

Did Not Answer



  1. In the last 12 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





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


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

  1. 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.)

  1. What is the primary spoken language in the client’s home? _________________________



  1. 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? ________________________

  1. What language is the client/caregiver most comfortable reading?

Client: .

Don’t Know Not Applicable

Caregiver: .

  1. 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.)

  1. What is the primary spoken language in the client’s home? ____________________________



  1. 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? _________________________



  1. What language are you most comfortable reading? _______________________________



  1. 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.





38.Are you (your child) Hispanic or Latino?

No, not Hispanic or Latino

Yes, Hispanic or Latino



39.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






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