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Protocol - Marital Status of Primary Caregiver

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Protocol Name from Source:

This section will be completed when reviewed by an Expert Review Panel.

Availability:

Publicly available

Description:

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.

Protocol:

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.

Equipment Needs

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.

Requirements

Requirement CategoryRequired
Average time of greater than 15 minutes in an unaffected individualNo
Major equipmentNo
Specialized requirements for biospecimen collectionNo
Specialized trainingNo

Mode of Administration

Self-administered

Life Stage:

Infant, Toddler, Child, Adolescent, Adult

Specific Instructions:

The PhenX Sickle Cell Disease Research and Scientific Panel (SRSP) notes that this protocol can also be self-administered.

Research Domain Information

Release Date:

July 30, 2015

Definition

Questionnaire 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).

Purpose

Marital status of the primary caregiver is associated with socioeconomic status, academic achievement, health status and outcomes, insurance coverage, and health care utilization.

Selection Rationale

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).

Language

English

Standards

StandardNameIDSource
Common Data Elements (CDE)Demographics Primary Caregiver Marital Status Assessment Text4924418CDE Browser

Process and Review

This section will be completed when reviewed by an Expert Review Panel.

Source

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.

General References

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.

Protocol ID:

840101

Variables:

Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX840101_SCD_MartialStatus_PrimaryCaregiverPX840101010000Marital status of primary caregiver4N/A
PX840101_SCD_MartialStatus_PrimaryCaregiver_Relationshipto_PatientPX840101020100Relationship of primary caregiver to patient4N/A
PX840101_SCD_MartialStatus_PrimaryCaregiver_Relationshipto_PatientOtherPX840101020200Relationship of primary caregiver to patient: Other4N/A