Protocol - Marital Status of Primary Caregiver
Protocol Name from Source:This section will be completed when reviewed by an Expert Review Panel.
This protocol includes two self-administered questions from the Silent Cerebral Infarct Multi-Center Clinical Trial (SIT). The first captures the marital status of the primary caregiver and the second captures the relationship of the primary caregiver to the respondent.
1. Marital status of primary caregiver
[ ] Married
[ ] Widowed
[ ] Separated
[ ] Divorced
[ ] Never married
[ ] Living with partner
[ ] Refused to answer
[ ] Unknown
2. Relationship of primary caregiver to patient
[ ] Mother
[ ] Father
[ ] Niece or nephew
[ ] Aunt or uncle
[ ] First cousin
[ ] Second cousin
[ ] Unknown cousin
[ ] Grandparent
[ ] Great grandparent
[ ] Great great grandparent
[ ] Great aunt or uncle
[ ] Great great aunt or great great uncle
[ ] Foster parent
[ ] Other Specify _______________________________
Personnel and Training Required
The interviewer must be trained to conduct personal interviews with individuals from the general population. The interviewer must be trained and found to be competent (i.e., tested by an expert) at the completion of personal interviews. The interviewer should be trained to prompt respondents further if a "don't know" response is provided.
The PhenX Working Group acknowledges these questions can be administered in a computerized or noncomputerized format (i.e., paper-and-pencil instrument). Computer software is necessary to develop computer-assisted instruments. The interviewer will require a laptop computer/handheld computer to administer a computer-assisted questionnaire.
|Average time of greater than 15 minutes in an unaffected individual||No|
|Specialized requirements for biospecimen collection||No|
Mode of Administration
Infant, Toddler, Child, Adolescent, Adult
The PhenX Sickle Cell Disease Research and Scientific Panel (SRSP) notes that this protocol can also be self-administered.
July 30, 2015
DefinitionQuestionnaire to obtain the marital status of the respondent’s primary caregiver (i.e. family member or another individual who takes primary responsibility for the respondent).
Marital status of the primary caregiver is associated with socioeconomic status, academic achievement, health status and outcomes, insurance coverage, and health care utilization.
These questions from the Silent Cerebral Infarct Multi-Center Clinical Trial (SIT) were vetted against similar protocols and selected as the best methodology to capture marital status of caregivers. These questions are based on similar questions from the National Health and Nutrition Examination Survey (NHANES).
|Common Data Elements (CDE)||Demographics Primary Caregiver Marital Status Assessment Text||4924418||CDE Browser|
Process and Review
This section will be completed when reviewed by an Expert Review Panel.
U.S. Department of Health and Human Services. National Institutes of Health. National Institute of Neurological Disorders and Stroke (NINDS). Silent Cerebral Infarct Multi-Center Clinical Trial. Form 02: Demographic / Phenotypic Information. Questions 14 and 15.
King, A.A., Rodeghier, M.J., Panepinto, J.A., Strouse, J.J., Casella, J.F., Quinn, C.T., Dowling, M.M., Sarnaik, S.A., Thompson, A.A., Woods, G.M., Minniti, C.P., Redding-Lallinger, R.C., Kirby-Allen, M., Kirkham, F.J., McKinstry, R., Noetzel, M.J., White, D.A., Kwiatkowski, J.K., Howard, T.H., Kalinyak, K.A., Inusa, B., Rhodes, M.M., Heiny, M.E., Fuh, B., Fixler, J.M., Gordon, M.O., & DeBaun, M.R. (2014). Silent cerebral infarction, income, and grade retention among students with sickle cell anemia. American Journal of Hematology 89(10), E188-E192.
Raphael, J.L., Butler, A.M., Rattler, T.L., Kowalkowski, M.A., Mueller, B.U., & Giordano, T.P. (2013). Parental information, motivation, and adherence behaviors among children with sickle cell disease. Pediatric Blood & Cancer 60(7), 1204-1210.
|Variable Name||Variable ID||Variable Description||Version||dbGaP Mapping|
|PX840101_SCD_MartialStatus_PrimaryCaregiver||PX840101010000||Marital status of primary caregiver||4||N/A|
|PX840101_SCD_MartialStatus_PrimaryCaregiver_Relationshipto_Patient||PX840101020100||Relationship of primary caregiver to patient||4||N/A|
|PX840101_SCD_MartialStatus_PrimaryCaregiver_Relationshipto_PatientOther||PX840101020200||Relationship of primary caregiver to patient: Other||4||N/A|