Protocol - Causes and Treatments of Known Infertility - Female
The interviewer asks the participant questions about whether the participant or partner has needed medical assistance with having a baby, the type of assistance, and the type of infertility problems.
Questions 1-3 are asked of both males and females.
The National Survey of Family Growth (NSFG) provides a card of response categories to the respondent. For example, in question 2, an investigator would provide the respondent with a card listing the categories "advice, infertility testing, drugs to improve ovulation," "surgery to correct blocked tubes," "artificial insemination," "treatment for varicocele," and "other types of medical help." A card was also provided in question 3. PhenX staff have removed references of the card from the questions.
The male NSFG questions (questions 1-3) have been modified to indicate partner instead of wife.
Below are some lay definitions from the Mayo Clinic website that researchers may find helpful in using the toolkit:
- Endometriosis is a disorder of the female reproductive system. In endometriosis, the endometrium, which normally lines the uterus, grows in other places as well. Most often, this growth is on the fallopian tubes, ovaries or the tissue lining the pelvis. When endometrial tissue is located elsewhere in your body, it continues to act as it normally would during a menstrual cycle: It thickens, breaks down and bleeds each month. Because there’s nowhere for the blood from this displaced tissue to exit your body, it becomes trapped, and surrounding tissue can become irritated. Trapped blood may lead to cysts, scar tissue and adhesions-abnormal tissue that binds organs together. This process can cause pelvic pain, especially during menstruation. Endometriosis also can cause fertility problems. (Mayo Clinic. http://www.mayoclinic.org/diseases-conditions/endometriosis/home/ovc-20236421. Accessed February 15, 2010.)
The PhenX Working Group recommends this measure should be preceded by "Difficulty Getting Pregnant" for a more complete assessment of infertility.
1. Did you or your partner* ever go/Have you or your partner* ever been to a doctor or other medical care provider to talk about ways to help you have a baby together?
5[ ]No (Skip to end)
NOTE: Do not code yes if main purpose of visit was for something other than seeking help to have a baby.
2. Which of the services (did/have) you or your/partner*) (have/had) to help you have a baby together? ENTER all that apply:
2[ ]Infertility testing
3[ ]Drugs to improve ovulation
4[ ]Surgery to correct blocked tubes
5[ ]Artificial insemination
6[ ]Treatment for varicocele
7[ ]Other types of medical help
3. When you and your partner* went for medical help to have a baby together, was your partner ever told that he had any of the following male infertility problems? ENTER all that apply:
1[ ]Low sperm count or no semen
3[ ]Genetic disorder that alters sperm production
4[ ]Low testosterone level
6[ ]None of the above
*Note: The questions have been modified by the PhenX Working Group to indicate partner instead of wife.
4. Has a doctor or other medical care provider ever told you that you had fibroid tumors or myomas in your uterus?
5. Has a doctor or other medical care provider ever told you had endometriosis?
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 participants further if a "don’t know" response is provided.
If a computer-assisted instrument is used, computer software may be necessary to develop the instrument. The interviewer will require a laptop computer/handheld computer to administer a computer-assisted questionnaire.
|Specialized requirements for biospecimen collection||No|
|Average time of greater than 15 minutes in an unaffected individual||No|
Mode of Administration
Participants 15-44 years of age
The National Survey of Family Growth (NSFG) 2013-2015 includes questions that address the causes and treatment of infertility. The survey includes both male and female respondents and represents the household population of the United States aged 15-44 years.
|caDSR Common Data Elements (CDE)||Female Known Infertility Reason Assessment Description Text||5067197||CDE Browser|
|Human Phenotype Ontology||Female Infertility||HP:0008222||HPO|
Process and Review
The Expert Review Panel #5 (ERP 5) reviewed the measures in the Reproductive Health domain.
Guidance from ERP 5 includes the following:
· Updated protocol
· New Data Dictionary
Back-compatible: there are changes to the Data Dictionary, previous version of the Data Dictionary and Variable mapping in Toolkit archive (link)
Protocol Name from Source
National Survey of Family Growth (NSFG)
Centers for Disease Control and Prevention (CDC). National Survey of Family Growth (NFSG) Staff Division of Vital Statistics, National Center for Health Statistics. National Survey of Family Growth (NSFG) 2013-2015 Questions relevant in both Male and Female Protocols: INFHELP IE-1 (question 1), INFSVCS IE-2 (question 2), NSFG INFRTHIS IE-7 (question 3). Female only questions UF HD8 (question 4), ENDO H9 (question 5).
Lepkowski, J. M., Mosher, W. D., Davis, K. E., Groves, R. M., van Hoewyk, J., & Willem, J. (2006). National Survey of Family Growth, Cycle 6: Sample design, weighting, imputation, and variance estimation. Vital Health Statistics, 2(142), 1-82.
Martinez, G. M., Chandra, A., Abma, J. C., Jones, J., & Mosher, W. D. (2006). Fertility, contraception, and fatherhood: Data on men and women from cycle 6 (2002) of the 2002 National Survey of Family Growth. Vital Health Statistics, 23(26), 1-142.
|Variable Name||Variable ID||Variable Description||dbGaP Mapping|
|PX100204020000||Which of the services (did/have) you or more||N/A|
|PX100204050000||Has a doctor or other medical care provider more||N/A|
|PX100204040000||Has a doctor or other medical care provider more||N/A|
|PX100204010000||Did you or your partner* ever go/Have you or more||N/A|
|PX100204030000||When you and your partner* went for medical more||N/A|
Causes and Treatments of Known Infertility
April 11, 2017
Questions to assess a participant’s experience with infertility
These questions are used to determine the cause of the participant’s or his or her partner’s infertility and the treatments that he or she may have sought. It is important to measure because it can be related to birth outcomes (e.g., multiple births). Infertility may also be associated with gene/environmental interactions.
Reproductive health, infertility, fertility drug, National Survey of Family Growth, NSFG