Men Living with Muscular Dystrophy Survey (telephone int

[NCBDDD] The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) Living with Muscular Dystrophy Survey

2023 2 13 Attachment E_MD STARnet Men Living with MD Phone Script

OMB: 0920-1405

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Form Approved

OMB No. 0920-New

Expiration Date: XX/XX/XXXX




Men Living with Muscular Dystrophy Survey

Instructions for Telephone Interviews

Overview

This telephone interview script is provided to assist interviewers when a respondent requests to do the interview by phone. The script asks the questions so that the interview flows smoothly. Please read and complete preparation steps before calling the participant. Make sure you have a good understanding of how to use this document. You should complete at least one mock phone interview prior to calling any participants. Because this phone survey does not have automated skip patterns, it requires careful attention to detail, and that interviewers are familiar with the survey.

Who can respond on the phone to the survey?

Do not conduct the survey with a proxy. An individual may assist the participant by repeating questions or with translation of the survey -- but only the participant may provide answers to the survey.

General Interviewing Conventions and Instructions

  • There are two versions of the survey: one for males and one for females. At the bottom of the pages you will a M for males and an F for females next to the page number. Make sure you have the correct version before you call the participant.

  • Before you do anything else, write the participant’s ID number at the bottom of every page.

  • The survey introduction script and questions must be read verbatim

  • Always read the text in the survey. Reciting the survey from memory can lead to unnecessary errors and missed updates to the scripts.

  • Practice pronouncing the participant’s name before initiating the call

  • All questions and all answer categories must be read exactly as they are worded

    • During the course of the survey, the use of neutral acknowledgment words such as the following is permitted:

      • Thank you

      • Alright

      • Okay

      • I understand, or I see

      • Yes, Ma’am

      • Yes, Sir

  • Adjust the pace of the survey interview to be conducive to the needs of the respondent

  • No changes are permitted to the order of the survey

  • No changes are permitted to the order of the answer categories for the questions

  • All transitional phrases must be read

  • Instructions to go to the next question must NOT be read. For example, do not read “ Go to question 52”. Simply go to that question and continue survey.

  • MISSING/DON’T KNOW (DK) response options are not read. If a participant is unable to provide a response for a given question (or refuses to provide a response), you mark the appropriate response and proceed to the next question

  • Be prepared to probe if the participant answers outside of the answer categories provided. Probe by repeating the answer categories only; do not interpret for the participant.

  • Pay attention to skip patterns.

  • There are some open text responses. Do your best to capture the respondent’s answer in the available space. If the person states more than you can fit, you can take notes on an additional piece of paper or the back of the survey packet. In these cases, please clearly indicate the question number. You can also tell the participant you only have limited space to record the answer, if necessary.

    • Example: If person speaking more than 2-3 minutes, you can say “Thank you, I have recorded what you have provided. I have a limited amount of space for this answer. Can we move on to the next question?”

Recording

If the participant agrees, the survey will be recorded for quality control purposes. Make sure you are familiar with the recording function from your zoom phone, such as knowing how to start and stop a recording and where the audio file will be saved. Do not start recording until or if the participant agrees. Follow all relevant privacy, data security, and IRB requirements with the storage, transmission, and deletion of survey data on audio files.

Scripts

Before starting, identify which script you will need:

  • Initiating Contact

  • Call back to complete a previously started survey

Make sure to have the necessary information to fill in the content of these scripts (participant gender, name, and age).

If the person asks to finish the survey later, you will need to use the script for:

  • Setting call back time when completing survey

For all scripts, please note:

  • All text that appears in lowercase letters must be read out loud

  • Text in UPPERCASE letters must not be read out loud

    • However, YES and NO response options are to be read if necessary

INITIATING CONTACT

START Hello, may I please speak to [PARTICIPANT NAME]?

OPTIONAL START:

Hello, my name is [INTERVIEWER NAME], may I please speak to [PARTICIPANT NAME]?

  1. YES Go to INTRODUCTION

This is [INTERVIEWER NAME] calling from the <Site> MD STARnet program at <grantee organization>. The MD STARnet program is funded by the Centers for Disease Control and Prevention. You have asked for assistance with completion of our survey. May we complete the survey together now?

  1. NO [REFUSAL]

  2. NO, NOT AVAILABLE RIGHT NOW Go to SETTING CALLBACK TIME WHILE COMPLETING A SURVEY



IF ASKED WHO IS CALLING:

This is [INTERVIEWER NAME] calling from the <Site> MD STARnet program at <grantee organization>. The MD STARnet program is funded by the Centers for Disease Control and Prevention. We are conducting a survey about people’s experiences living with muscular dystrophy. Is [PARTICIPANT NAME] available?



IF ASKED WHETHER PERSON CAN SERVE AS PROXY FOR SAMPLED PARTICIPANT:

For this survey, we need to speak directly to [PARTICIPANT NAME]. Is [PARTICIPANT NAME] available?



IF THE SAMPLED PARTICIPANT IS NOT AVAILABLE:

Can you tell me a convenient time to call back to speak with (him/her)?



IF THE SAMPLED PARTICIPANT SAYS THIS IS NOT A GOOD TIME:

If you don’t have the time now, when is a more convenient time to call you back?



IF ASKED IF YOU WOULD LIKE TO SPEAK TO “SR.” OR “JR.”:

I would like to speak with [PARTICIPANT NAME] who is approximately [AGE RANGE]. Is that person available?



IF SOMEONE OTHER THAN THE SAMPLED PARTICIPANT ANSWERS THE PHONE RECONFIRM THAT YOU ARE SPEAKING WITH THE SAMPLED PARTICIPANT WHEN HE OR SHE PICKS UP.



CALL BACK TO COMPLETE A PREVIOUSLY STARTED SURVEY



START Hello, may I please speak to [PARTICIPANT NAME]?



OPTIONAL START:

Hello, my name is [INTERVIEWER NAME], may I please speak to [PARTICIPANT NAME]?



<1> YES Go to INTRODUCTION

<2> NO [REFUSAL]

<3> NO, NOT AVAILABLE RIGHT NOW Go to SETTING CALLBACK TIME WHILE COMPLETING A SURVEY



IF ASKED WHO IS CALLING:

This is [INTERVIEWER NAME] calling from the <Site> MD STARnet program at <grantee organization>. The MD STARnet program is funded by the Centers for Disease Control and Prevention. Is [PARTICIPANT NAME] available to complete a survey that [HE/SHE] started at an earlier date?



CONFIRM PARTICIPANT FOR A PREVIOUSLY STARTED SURVEY:

This is [INTERVIEWER NAME] calling from <grantee organization>, on behalf of <Site> MD STARnet program. I would like to confirm that I am speaking with [PARTICIPANT NAME]. I am calling to continue the survey started on an earlier date. CONTINUE SURVEY WHERE PREVIOUSLY LEFT OFF.



CONFIRM PARTICIPANT FOR A CALL BACK:

This is [INTERVIEWER NAME] calling from <grantee organization>, on behalf of <Site> MD STARnet program. I would like to confirm that I am speaking with [SAMPLED PARTICIPANT NAME]. I am calling back at the time you requested to take the survey.





SETTING CALLBACK TIME WHILE COMPLETING A SURVEY



Occasionally, a participant may need to leave the telephone call after staring the survey with you. When this occurs, you will secure a day and time to call the participant back and record that information here.

START I would like to schedule a day and time when I can call you back to complete the survey. What day and time is best for you?

[SET CALLBACK]



Day of the week: ________________________



Date: _________________________________



Time: __________________________________



Any additional Notes about Callback:


























Men Living with Muscular Dystrophy Survey

Shape1

START HERE





Shape2

INTRODUCTION





Shape3

This survey asks about you and your experiences as a person diagnosed with muscular dystrophy. We will ask you about you and your household, your experience with COVID-19 and vaccination, chronic pain and fatigue related to your muscular dystrophy, and your experiences with family planning and family building.


The survey should take no more than 15 minutes to complete. You may skip any questions you do not wish to answer. We will not publish any information that can be linked to you or your household.


This survey is conducted by <Site> Muscular Dystrophy Surveillance, Research and Tracking Network (MD STARnet) with funding from the Centers for Disease Control and Prevention.


If you have any questions about this survey, you can call our study coordinator at <1 (XXX) XXX-XXXX>.


If you have questions about your rights as a research participant, please contact the <grantee institution office of research> at <1 (XXX)XXX-XXXX>.



Thank you for helping improve care for people like you living with muscular dystrophy!

We would like to record this call for quality assurance. Is it ok for me to record this call?

  • Yes Start RecordingThank you. I have started the call recording”

  • No Do Not RecordThank you. I will not record the call.”


If the person asks for more information about the call recording: The recording will be kept on a secure server only accessible to the research team. It will only be used to ensure your answers are accurately recorded in the research dataset.





Shape5 Shape4

The first set of questions are about you and your household.



  1. What is your ethnicity? Are you Hispanic or Latino?

  • Yes, Hispanic or Latino

  • No, Not Hispanic or Latino



  1. Now, I am going to read a list of categories. Please choose one or more of the following categories to describe your race. What race do you identify with?

  • American Indian/Alaskan Native

  • Asian

  • Black or African American

  • Native Hawaiian or Pacific Islander

  • White

  • Other



  1. Are you currently attending a school or college?

  • Yes

  • No

Do not read:

  • I don’t know

  • I prefer not to answer



  1. What is the highest level of education you completed? Is it…

  • Elementary school (grades 1 through 8)

  • Some high school (grades 9 through 11)

  • Graduated high school (grade 12)

  • Some college or technical school

  • Graduated college or technical school

  • Graduate school

Do not read:

  • I don’t know

  • I prefer not to answer



  1. Do you own or rent your home?

  • Own

  • Rent

  • Other arrangement

Do not read:

  • I don’t know

  • I prefer not to answer



  1. What is your current employment status?

  • Employed for wages (Go to next question, otherwise Go to question 8)

  • Self-employed (Go to next question, otherwise Go to question 8)

  • Out of work for a year or more

  • Out of work for less than a year

  • Homemaker

  • Student

  • Retired

  • Unable to work

  • Other, please specify: _____________

Do not read:

  • I don’t know

  • I prefer not to answer



  1. If employed, how many hours per week are you working?

  • Less than 20 hours per week

  • 20-40 hours per week

  • More than 40 hours per week

Do not read:

  • I don’t know

  • I prefer not to answer



  1. During the last 12 months, what was your yearly total household income before taxes? Was it…

  • $40 to $9,999

  • $10,000 to $24,999

  • $25,000 to 49,999

  • $50,000 to 74,999

  • $75,000 to 99,999

  • $100,000 to 149,999

  • $150,000 and greater

Do not read:

  • I don’t know

  • I prefer not to answer

Shape6 The following questions are about COVID-19 and influenza.


  1. To your knowledge, have you had COVID-19?

  • Yes

  • No Go to question 13

Do not read:

  • I don’t know Go to 13

  • I prefer not to answer Go to 13


  1. Was your infection confirmed by a test?

  • Yes, confirmed by test

  • No, not confirmed by test

Do not read:

  • I don’t know

  • I prefer not to answer


  1. Describe the level of care you received. Would you say you…

  • Did not seek medical care

  • Received medical care but was not hospitalized

  • Were hospitalized

Do not read:

  • I don’t know

  • I prefer not to answer


  1. How would you characterize your symptoms? Would you say you had…

  • No symptoms

  • Mild symptoms (Such as low-grade fever, cough, shortness of breath)

  • Moderate symptoms (Such as moderate difficulty breathing, body aches, fatigue)

  • Severe symptoms (Such as severe difficulty breathing, persistent pain, inability to stay awake)

Do not read:

  • I don’t know

  • I prefer not to answer


  1. Have you received a COVID-19 vaccine?

  • Yes Go to question 15

  • No

Do not read:

  • I don’t know Go to 15

  • I prefer not to answer Go to 15


Shape7

  1. What are the reasons you have not received a COVID-19 vaccine? I will read a list of potential reasons. Please tell me whether each one is a reason you have not had the COVID vaccine.

  • I would like to get it but have not been able to

  • I am worried about the side effects of the vaccine

  • I do not like vaccines or needles

  • I am not worried about getting COVID-19

  • I already had COVID-19

  • I have a medical condition that prevents me from getting the vaccine

  • I do not think the vaccine is effective

  • I just don’t want the vaccine

  • Other

  • [If “other selected] Please specify the reason:


____________________________________

Do not read:

  • I don’t know

  • I prefer not to answer


  1. Have you ever received a flu vaccine?

  • Yes

  • No Go to question 17

Do not read:

  • I don’t know Go to question 18

  • I prefer not to answer Go to 18


  1. Did you receive the flu vaccine any time in the last 12 months?

  • Yes Go to question 18

  • No

Do not read:

  • I don’t know Go to 18

  • I prefer not to answer Go to 18










Shape8 Shape9


  1. What are the reasons you have not received the flu vaccine during the past 12 months? I will read a list of potential reasons. Please tell me whether each one is a reason you have not had the flu vaccine in last 12 months.

  • I would like to get it but have not been able to

  • I am worried about the side effects of the vaccine

  • I do not like vaccines or needles

  • I am not worried about getting the flu

  • I already had the flu

  • I have a medical condition that prevents me from getting the vaccine

  • I do not think the vaccine is effective

  • I just don’t want the vaccine

  • Other

  • [If “other selected] Please briefly specify the reason:






____________________________________


Do not read:

  • I don’t know

  • I prefer not to answer


The next set of questions ask about your experience with chronic pain and fatigue related to your muscular dystrophy.

  1. In the past 30 days, how many days have you experienced pain related to your muscular dystrophy in any part of your body?

Do not read response options:



  • ________ number of days

  • I cannot recall having muscular dystrophy-related pain in the last 30 days Go to question 52

  • I prefer not to answer Go to 52



  1. Is your pain managed by medication or other methods?

  • Yes

  • No

Do not read:

  • I don’t know

  • I prefer not to answer


  1. What time of day is your pain the worst? Please tell me all that apply.

  • Morning

  • Afternoon

  • Evening and night

Do not read:

  • I don’t know

  • I prefer not to answer


  1. Where in your body do you typically have pain? I will read a list of potential responses. Please tell me whether this is a part of your body where you typically have pain.

Check all that apply.

  • Head

  • Neck

  • Shoulders

  • Arms

  • Back

  • Chest

  • Stomach

  • Hips

  • Legs

  • Feet

  • Other

  • [If “other selected] Please specify the other area where you have pain:



____________________________________


Do not read:

  • I don’t know

  • I prefer not to answer





Shape10 The next questions are about how you have managed your pain in the past 30 days.


  1. Do you use over-the-counter/non-prescription pain medications such as aspirin, ibuprofen, or acetaminophen to manage the pain related to your muscular dystrophy?

  • Yes

  • No Go to question 25

Do not read:

  • I don’t know Go to 25

  • I prefer not to answer Go to 25


  1. How often do you use any combination of this type of medication to manage your pain?

  • Every day

  • 2-6 days per week

  • Once a week

  • Once a month

  • Not in the last month

Do not read:

  • I don’t know

  • I prefer not to answer


  1. How helpful are any combination of these medications in managing your pain? Do they…

  • Completely relieve the pain

  • Reduce pain so you can manage your normal activities

  • Provide some relief but not enough that you can resume normal activities

  • Provide little or no pain relief

Do not read:

  • I don’t know

  • I prefer not to answer


  1. Do you use prescription opioid pain medications – such as Percocet (oxycodone), Vicodin (hydrocodone), or Ultram (tramadol) – to manage the pain related to your muscular dystrophy?

  • Yes

  • No Go to question 28

Do not read:

  • I don’t know Go to 28

  • I prefer not to answer Go to 28

  1. How often do you use any combination of this type of medication to manage your pain?

  • Every day

  • 2-6 days per week

  • Once a week

  • Once a month

  • Not in the last month

Do not read:

  • I don’t know

  • I prefer not to answer


  1. How helpful are any combination of these medications in managing your pain? Do they…

  • Completely relieve the pain

  • Reduce pain so you can manage my normal activities

  • Provide some relief but not enough that you can resume normal activities

  • Provide little or no pain relief

Do not read:

  • I don’t know

  • I prefer not to answer


  1. Do you use cannabidiol (CBD) or any other marijuana-based treatment products to manage the pain related to your muscular dystrophy?

  • Yes

  • No Go to question 31

Do not read:

  • I don’t know Go to 31

  • I prefer not to answer Go to 31


  1. How frequently do you use any combination of CBD or marijuana-based treatment products to manage your pain?

  • Every day

  • 2-6 days per week

  • Once a week

  • Once a month

  • Not in the last month

Do not read:

  • I don’t know

  • I prefer not to answer



Shape11

  1. Shape12 How helpful are any combination of CBD or marijuana-based treatment products in managing your pain?

  • Completely relieve the pain

  • Reduce pain so I can manage my normal activities

  • Provide some relief but not enough that I can resume normal activities

  • Provide little or no pain relief

Do not read:

  • I don’t know

  • I prefer not to answer


  1. Do you use alternative medications – such as herbal supplements – to manage the pain related to your muscular dystrophy?

  • Yes

  • No Go to question 34

Do not read:

  • I don’t know Go to 34

  • I prefer not to answer Go to 34


  1. How frequently do you use any combination of this type of medication to manage your pain?

  • Every day

  • 2-6 days per week

  • Once a week

  • Once a month

  • Not in the last month

Do not read:

  • I don’t know

  • I prefer not to answer


  1. How helpful are any combination of these medications in managing your pain?

  • Completely relieve the pain

  • Reduce pain so you can manage my normal activities

  • Provide some relief but not enough that you can resume normal activities

  • Provide little or no pain relief

Do not read:

  • I don’t know

  • I prefer not to answer



  1. Shape13 Do you use nonpharmacological methods such as biofeedback, physical therapy, behavioral modifications, better sleep practices, better hygiene practices, or diet to manage the pain related to your muscular dystrophy?

  • Yes

  • No Go to question 37

Do not read:

  • I don’t know Go to 37

  • I prefer not to answer Go to 37


  1. How frequently do you use any combination of these methods to manage your pain?

  • Every day

  • 2-6 days per week

  • Once a week

  • Once a month

  • Not in the last month

Do not read:

  • I don’t know

  • I prefer not to answer


  1. How helpful are any combinations of these methods in managing your pain?

  • Completely relieve the pain

  • Reduce pain so you can manage your normal activities

  • Provide some relief but not enough that you can resume normal activities

  • Provide little or no pain relief

Do not read:

  • I don’t know

  • I prefer not to answer


  1. Do you use any other method or therapy to manage your pain?

  • Yes

  • No Go to question 41

Do not read:

  • I don’t know Go to 41

  • I prefer not to answer Go to 41


  1. Shape16 Shape15 Shape14 What other methods or therapies do you use?


  1. How frequently do you use any combination of these other methods to manage your pain?

  • Every day

  • 2-6 days per week

  • Once a week

  • Once a month

  • Not in the last month

Do not read:

  • I don’t know

  • I prefer not to answer


  1. How helpful are any combination of these other methods in managing your pain?

  • Completely relieve the pain

  • Reduce pain so I can manage my normal activities

  • Provide some relief but not enough that I can resume normal activities

  • Provide little or no pain relief

Do not read:

  • I don’t know

  • I prefer not to answer



The next questions ask about the intensity of your pain. For each item, please tell me the option that best describes the intensity of your pain during the indicated time-period.









  1. In the past 7 days, how intense was your pain at its worst? Was it…

  • No pain

  • Mild

  • Moderate

  • Severe

  • Very severe

Do not read:

  • I don’t know

  • I prefer not to answer


  1. In the past 7 days, how intense was your average pain? Was it…

  • No pain

  • Mild

  • Moderate

  • Severe

  • Very severe

Do not read:

  • I don’t know

  • I prefer not to answer


  1. What is your level of pain right now? Is it…

  • No pain

  • Mild

  • Moderate

  • Severe

  • Very severe

Do not read:

  • I don’t know

  • I prefer not to answer


The next questions are about the impact of pain on your activities. For each item, please select the option that best describes how often the impact of pain occurred in the past 7 days.


  1. In the past 7 days, how much did pain interfere with your day to day activities?

  • Not at all

  • A little bit

  • Somewhat

  • Quite a bit

  • Very much

Do not read:

  • I don’t know

  • I prefer not to answer

  1. Shape17 In the past 7 days, how much did pain interfere with work around the home? Was it…

  • Not at all

  • A little bit

  • Somewhat

  • Quite a bit

  • Very much

Do not read:

  • I don’t know

  • I prefer not to answer


  1. In the past 7 days, how much did pain interfere with your ability to participate in social activities? Was it…

  • Not at all

  • A little bit

  • Somewhat

  • Quite a bit

  • Very much

Do not read:

  • I don’t know

  • I prefer not to answer


  1. In the past 7 days, how much did pain interfere with your household chores? Was it…

  • Not at all

  • A little bit

  • Somewhat

  • Quite a bit

  • Very much

Do not read:

  • I don’t know

  • I prefer not to answer


  1. In the past 7 days, how much did pain interfere with the things you usually do for fun? Was it…

  • Not at all

  • A little bit

  • Somewhat

  • Quite a bit

  • Very much

Do not read:

  • I don’t know

  • I prefer not to answer


  1. In the past 7 days, how much did pain interfere with your enjoyment of social activities?

  • Not at all

  • A little bit

  • Somewhat

  • Quite a bit

  • Very much

Do not read:

  • I don’t know

  • I prefer not to answer


  1. In the past 7 days, how much did pain interfere with your enjoyment of life?

  • Not at all

  • A little bit

  • Somewhat

  • Quite a bit

  • Very much

Do not read:

  • I don’t know

  • I prefer not to answer


  1. In the past 7 days, how much did pain interfere with your family life?

  • Not at all

  • A little bit

  • Somewhat

  • Quite a bit

  • Very much

Do not read:

  • I don’t know

  • I prefer not to answer


The next questions are about how tired you felt during the past week and how feeling tired impacted your daily activities.


  1. In the past 7 days, how often was the statement ”I felt exhausted.” true?

  • Never

  • Rarely

  • Sometimes

  • Often

  • Always

Do not read:

  • I don’t know

  • I prefer not to answer


  1. Shape18 In the past 7 days, how often was the statement “I felt like I had no energy” true?

  • Never

  • Rarely

  • Sometimes

  • Often

  • Always

Do not read:

  • I don’t know

  • I prefer not to answer


  1. In the past 7 days, how often was the statement “I felt fatigued” true?

  • Never

  • Rarely

  • Sometimes

  • Often

  • Always

Do not read:

  • I don’t know

  • I prefer not to answer


  1. In the past 7 days, how often was the following statement true? “I was too tired to do my household chores.”

  • Never

  • Rarely

  • Sometimes

  • Often

  • Always

Do not read:

  • I don’t know

  • I prefer not to answer


  1. In the past 7 days, how often was the following statement true? “I was too tired to leave the house.”

  • Never

  • Rarely

  • Sometimes

  • Often

  • Always

Do not read:

  • I don’t know

  • I prefer not to answer


  1. In the past 7 days, how often was the following statement true? “I was frustrated by being too tired to do the things I wanted to do.”

  • Never

  • Rarely

    Shape19
  • Sometimes

  • Often

  • Always

Do not read:

  • I don’t know

  • I prefer not to answer


  1. In the past 7 days, how often was the statement “I felt tired” true?

  • Never

  • Rarely

  • Sometimes

  • Often

  • Always

Do not read:

  • I don’t know

  • I prefer not to answer


  1. In the past 7 days, how often was the statement following statement true? “I had to limit my social activity because I was tired.”

  • Never

  • Rarely

  • Sometimes

  • Often

  • Always

Do not read:

  • I don’t know

  • I prefer not to answer


If the respondent’s response to all of the statements 52-59 was ‘Never’ or ‘Rarely’, please go to question 61.











  1. Shape20 How have you managed your fatigue in the past 7 days? Please tell me all that apply.

  • Stimulants

  • Exercise

  • Shape21 Coffee and/or other caffeine containing beverages

  • Prescription medications

  • Non-prescription medications

  • Dietary Supplements

  • Sleep

  • Herbal remedies

  • Other, specify __________________

Do not read:

  • I don’t know

  • I prefer not to answer


  1. Shape22 Please tell us anything else about your experience with pain or fatigue:


The next questions are about your experience with muscular dystrophy and family planning.


  1. At what age were you diagnosed with muscular dystrophy?


_______

Do not read:

  • I don’t know

  • I prefer not to answer


  1. Have you ever talked with a genetic counselor or other medical provider about the chance for your children or other family members to have muscular dystrophy?

  • Yes

  • No Go to question 66

Do not read:

  • I don’t know Go to 66

  • I prefer not to answer Go to 66


  1. When did you talk with the genetic counselor or medical provider? Was it…

  • Shape23 Before considering or having children

  • During one of my partner’s pregnancies

  • Between my partner’s pregnancies

  • After I was done having children Go to question 66

Do not read:

  • I don’t remember/I don’t know Go to 66

  • I prefer not to answer Go to 66


  1. How did speaking with this person affect your decision to have (more) children?

  • It did not/will not affect my decision to have children

  • I decided not to have my own children

  • I decided to adopt

  • I decided to see a medical provider who could help me have children without muscular dystrophy

  • Other, specify: ____________________

________________________________

Do not read:

  • I don’t know

  • I prefer not to answer



  1. Some men are not physically able to father children. As far as you know, is it physically possible for you to biologically father a child now or in the future?

  • Yes

  • No

Do not read:

  • I don’t know

  • I prefer not to answer



  1. Have you ever had a vasectomy or any other operation that makes it impossible for you to father a child?

  • Yes

  • No

Do not read:

  • I don’t know

  • I prefer not to answer

  1. Were you ever told that you had any of the following male infertility problems? Please tell me all that apply.

  • Low sperm count or no sperm

    Shape24 Shape25
  • Varicocele or varicose vein formation in scrotum.

  • Genetic disorder that alters sperm production

  • Low testosterone level

  • Other, specify: ____________________

________________________________

  • None of the above

Do not read:

  • I don’t know

  • I prefer not to answer



  1. As far as you know, how many times have you ever made someone pregnant?

Please include pregnancies that ended in live birth, pregnancies that ended in miscarriage, stillbirth, or abortion, and pregnancies that are ongoing.

  • Number of times _____________

  • I have never made someone pregnant Go to question 74

Do not read:

  • I don’t know Go to question 74

  • I prefer not to answer Go to question 74



  1. How many of these pregnancies ended with a live birth?

  • Number of pregnancies __________

Do not read:

  • I don’t know

  • I prefer not to answer



  1. How many pregnancies ended in miscarriage? A miscarriage is a pregnancy that ends before 20 weeks gestation.

  • Number of pregnancies ended in miscarriage _________

Do not read:

  • I don’t know

  • I prefer not to answer

  1. How many pregnancies ended in stillbirth? A stillbirth is the birth of an infant that was alive through the first 20 weeks of pregnancy but died before or during delivery.

  • Number of pregnancies ended in stillbirth__________

Do not read:

  • I don’t know

  • I prefer not to answer



  1. Did you and your partner use any of the following for any pregnancy? Please tell me all that apply.

  • None

  • Hormone therapy or medications

  • In-vitro fertilization (IVF)

  • Pre-implantation diagnosis. (Genetic testing of the embryo before implantation following IVF)

  • Artificial insemination with your sperm

  • Artificial insemination with donor sperm

  • Drugs to improve ovulation

  • Surgery to correct blocked tubes

  • Treatment for varicocele

    Shape26
  • Other types of medical help, specify

Do not read:

  • I don’t know

  • I prefer not to answer



  1. Shape27 Please tell us anything else about your experience with family planning or fathering children?




Shape28

Shape29 This is the end of the survey. Additional information on MD STARnet can be found at the following links:

https://www.cdc.gov/ncbddd/musculardystrophy/research.html


AND

https://mdstarnet.org/

If you have any questions about this survey, you can call our study coordinator at <1 (XXX) XXX-XXXX>.


If you have questions about your rights as a research participant, please contact the <grantee institution office of research> at <1 (XXX)XXX-XXXX>.


Thank you for taking the time to answer our questions. Your answers will help us to better understand the lives of people with muscular dystrophy and can inform decision makers who plan services to support people with muscular dystrophy and their families.

Shape30

Space For Additional Notes:

INTERVIEWER: You can use this space to record additional notes for open-text responses. Please indicate the question number for all additional notes.


Public reporting burden of this collection of information is estimated to average 15 minutes per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. 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. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to CDC/ATSDR Reports Clearance Officer; 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333; Attn: OMB-PRA (0920-New)


Participant ID: _________________ Page 1/17 M


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AuthorZimmerman, Jamie F. (CDC/DDNID/NCBDDD/DBDID) (CTR)
File Modified0000-00-00
File Created2023-08-26

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