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Protocol - Personal History of Kidney Failure

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Description:

This protocol includes three interviewer-administered questions from the Strong Heart Study about kidney failure, renal dialysis, and kidney transplantation.

Protocol:

1. Has a medical person ever told you that you had kidney failure?

1 [ ] Yes

2 [ ] No (skip to end)

9 [ ] Unknown (skip to end)

1a. If "YES," are one or both working well now?

1 [ ] Yes

2 [ ] No

9 [ ] Unknown

1b. How old were you when you were first told by a medical person that you had kidney failure? Indicate the actual age.

|__|__|__|

999 [ ] Don’t Know

2. Are you currently on renal dialysis?

1 [ ] Yes

2 [ ] No

9 [ ] Unknown

3. Have you ever had a kidney transplant?

1 [ ] Yes

2 [ ] No

9 [ ] Unknown

Protocol Name from Source:

Strong Heart Study, Phase IV-Family Study, Medical History Form

Availability:

Publicly available

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

These questions can be administered in a computerized or non-computerized 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
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Interviewer-administered questionnaire

Life Stage:

Adult, Senior

Participants:

An adult aged 18 or older

Specific Instructions:

None

Selection Rationale

The protocol from the Strong Heart Study was vetted against similar protocols and chosen because it has been used in a major U.S. study and because the questions capture the date and history of kidney disease, history of kidney dialysis, and history of kidney transplantation.

Language

English

Standards
StandardNameIDSource
Common Data Elements (CDE) Person Kidney Failure Personal Medical History Assessment Description Text 3070678 CDE Browser
Logical Observation Identifiers Names and Codes (LOINC) Pers hx kidney failure proto 62799-2 LOINC
Derived Variables

None

Process and Review

The Expert Review Panel #1 reviewed the measures in the Anthropometrics, Diabetes, Physical Activity and Physical Fitness, and Nutrition and Dietary Supplements domains.

Guidance from the ERP includes:

  • No significant changes

Back-compatible: no changes to Data Dictionary

Previous version in Toolkit archive (link)

Source

U.S. Department of Health and Human Services; National Institutes of Health; National Heart, Lung and Blood Institute. (2004). Strong Heart Study. Phase IV-Family Study. Medical History Form. Section B. Questions 8, 8a, 8b, 9, and 10.

General References

None

Protocol ID:

140601

Variables:
Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX140601_Dialysis PX140601020000 Are you currently on renal dialysis? 4 N/A
PX140601_Kidneys_Working_Now PX140601010100 If "YES", are one or both working well now? 4 N/A
PX140601_Kidney_Failure PX140601010000 Has a medical person ever told you that you had kidney failure? 4 N/A
PX140601_Kidney_Failure_Age PX140601010200 How old were you when you were first told by a medical person that you had kidney failure? Indicate the actual age. 4 N/A
PX140601_Kidney_Failure_Age_Coded PX140601010201 How old were you when you were first told by a medical person that you had kidney failure? Indicate the actual age. 4 N/A
PX140601_Kidney_Transplant PX140601030000 Have you ever had a kidney transplant? 4 N/A
Research Domain Information
Measure Name:

Personal History of Kidney Failure

Release Date:

October 1, 2015

Definition

A questionnaire to determine if the respondent has a history of kidney failure.

Purpose

The risk of developing kidney disease is correlated with family history of kidney disease as well as several conditions (e.g., hypertension) and diseases (e.g., diabetes). Diabetes is the leading cause of chronic kidney disease in the United States.

Keywords

Diabetes, kidney disease, kidney failure, dialysis, nephropathy, glomerulonephritis, SHS