Women Living with Muscular Dystrophy Survey (telephone i
[NCBDDD] The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) Living with Muscular Dystrophy Survey
2013 2 13 Attachment F_MD STARnet Women Living with MD Phone Script
OMB: 0920-1405
Form Approved
OMB No. 0920-New
Expiration Date: XX/XX/XXXX
Women 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]?
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?
NO [REFUSAL]
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:
Women Living with Muscular Dystrophy Survey
START HERE
INTRODUCTION
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 20 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 Recording “Thank you. I have started the call recording”
No Do Not Record “Thank 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.
The first set of questions are about you and your household.
What is your ethnicity? Are you Hispanic or Latino?
Yes, Hispanic or Latino
No, Not Hispanic or Latino
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/Alaska Native
Asian
Black or African American
Native Hawaiian or Pacific Islander
White
Other
Yes
No
Do not read:
I don’t know
I prefer not to answer
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
Do you own or rent your home?
Own
Rent
Other arrangement
Do not read:
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
Do not read:
I don’t know
I prefer not to answer
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
$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:
The
following questions are about COVID-19 and influenza.
To your knowledge, have you had COVID-19?
Do not read:
I don’t know Go to 13
I prefer not to answer Go to 13
Yes, confirmed by test
No, not confirmed by test
Do not read:
I don’t know
I prefer not to answer
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
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
Have you received a COVID-19 vaccine?
Do not read:
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 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
Other
[If “other selected] Please specify the reason:
________________________________
Do not read:
I don’t know
I prefer not to answer
Do not read:
I don’t know Go to question 18
I prefer not to answer Go to 18
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
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.
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
Yes
No
Do not read:
I don’t know
I prefer not to answer
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
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
The
next questions are about how you have managed your pain in the past
30 days.
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?
Do not read:
I don’t know Go to 25
I prefer not to answer Go to 25
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
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
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?
Do not read:
I don’t know Go to 28
I prefer not to answer Go to 28
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
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
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
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
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
Do you use alternative medications – such as herbal supplements – to manage the pain related to your muscular dystrophy?
Do not read:
I don’t know Go to 34
I prefer not to answer Go to 34
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
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
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?
Do not read:
I don’t know Go to 37
I prefer not to answer Go to 37
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
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
Do you use any other method or therapy to manage your pain?
Do not read:
I don’t know Go to 41
I prefer not to answer Go to 41
What
other methods or therapies do you use?
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
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.
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
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
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.
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
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
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
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
In the past 7 days, how much did pain interfere with the things you usually do for fun? Was it…
Do not read:
I don’t know
I prefer not to answer
Not at all
A little bit
Somewhat
Quite a bit
Very much
Do not read:
I don’t know
I prefer not to answer
In the past 7 days, how much did pain interfere with your enjoyment of life?
Do not read:
I don’t know
I prefer not to answer
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.
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
-
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
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
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
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
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
Sometimes
Often
-
Always
Do not read:
I don’t know
I prefer not to answer
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
In the past 7 days, how often was the statement following statement true? “I had to limit my social activity because I was tired.”
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.
How
have you managed your fatigue in the past 7 days? Please
tell me all that apply.
Stimulants
Exercise
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
The next questions are about your experience with muscular dystrophy and family planning.
At what age were you diagnosed with muscular dystrophy?
Do not read:
I don’t know
I prefer not to answer
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?
Do not read:
I don’t know Go to 66
I prefer not to answer Go to 66
When
did you talk with the genetic counselor or medical provider?
Before considering or having children
During a pregnancy
Between 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
How did speaking with this person affect your decision to have (more) children?
It did not/will not affect your decision to have children
You decided not to have your own children
You decided to adopt
You decided to see a medical provider who could help me have children without muscular dystrophy
Other
[If
“other selected]
Please specify the effect on your decision to have children
Do not read:
I don’t know
I prefer not to answer
Have you ever been pregnant?
Do not read:
Yes
No
I don’t know
I prefer not to answer
Did you ever have trouble getting pregnant or were unable to get pregnant?
Do not read:
Yes
No
I have not tried to get pregnant
I don’t know
I prefer not to answer
Were you ever told by a medical provider that you would not be able to get pregnant or might have a hard time getting pregnant due to your muscular dystrophy?
Do not read:
Yes
No
I don’t know
I prefer not to answer
Did you ever decide not to become pregnant because it would be a risk to your own health?
Do not read:
Yes
No
I don’t know
I prefer not to answer
If the respondent has never been pregnant (Q66), skip to Q119.
Next, we are going to ask some questions about your pregnancies
How many times have you been pregnant, including pregnancies that may have ended in miscarriages, stillbirths, abortion, or a tubal or molar pregnancy?
Do not read:
______ times
I don’t know
I prefer not to answer
In your first pregnancy, how many babies were you carrying?
Do not read (If the person is confused, say “Would you say…” and read response options).
1
2 (twins)
3 or more (triplets or more)
I don’t know
I prefer not to answer
What was the outcome(s) of the pregnancy?
Read
if multiple babies indicated in previous question:
If applicable, you can select more than one option.
Was the outcome that…
Baby was born alive at less than 37 weeks of pregnancy (early or preterm)
Baby was born alive at 37 weeks or later (term)
Miscarriage (fetal loss) before 20 weeks of pregnancy
Stillbirth (fetal loss) at 20 weeks of pregnancy or later
Abortion (pregnancy medically ended for any reason)
Do not read:
I don’t know
I prefer not to answer
When did this pregnancy end? Please tell me the month and year.
_ _ / _ _ _ _ (mm/yyyy)
Do not read:
I don’t know
I prefer not to answer
If the respondent only had one pregnancy (See Q70), please go to question 86.
In your second pregnancy, how many babies were you carrying?
1
2
(twins)3 or more (triplets or more)
Do not read:
I don’t know
I prefer not to answer
What was the outcome(s) of the pregnancy?
Read
if multiple babies indicated in previous question:
If applicable, you can select more than one option.
Baby was born alive at less than 37 weeks of pregnancy (early or preterm)
Baby was born alive at 37 weeks or later (term)
Miscarriage (fetal loss) before 20 weeks of pregnancy
Stillbirth (fetal loss) at 20 weeks of pregnancy or later
Abortion (pregnancy medically ended for any reason)
Do not read:
I don’t know
I prefer not to answer
When did this pregnancy end?
Do not read:
I don’t know
I prefer not to answer
If respondent had only two pregnancies, please go to question 86.
In your third pregnancy, how many babies were you carrying?
Do not read:
1
2 (twins)
3 or more (triplets or more)
I don’t know
I prefer not to answer
What was the outcome(s) of the pregnancy? If you carried more than one baby, please check all that apply.
Baby was born alive at less than 37 weeks of pregnancy (early or preterm)
Baby was born alive at 37 weeks or later (term)
Miscarriage (fetal loss) before 20 weeks of pregnancy
Stillbirth (fetal loss) at 20 weeks of pregnancy or later
Abortion (pregnancy medically ended for any reason)
Do not read:
I don’t know
I prefer not to answer
When did this pregnancy end?
_ _ / _ _ _ _ (mm/yyyy)
Do not read:
I don’t know
I prefer not to answer
If the respondent only had three pregnancies, please go to question 86.
In your fourth pregnancy, how many babies were you carrying?
Do not read:
1
2 (twins)
3 or more (triplets or more)
I don’t know
I prefer not to answer
What was the outcome(s) of the pregnancy? If you carried more than one baby, please check all that apply.
Baby was born alive at less than 37 weeks of pregnancy (early or preterm)
Baby was born alive at 37 weeks or later (term)
Miscarriage (fetal loss) before 20 weeks of pregnancy
Stillbirth (fetal loss) at 20 weeks of pregnancy or later
Abortion (pregnancy medically ended for any reason)
Do not read:
I don’t know
I
prefer not to answer
When did this pregnancy end?
_ _ / _ _ _ _ (mm/yyyy)
Do not read:
I don’t know
I prefer not to answer
If you only had four pregnancies, please go to question 86.
In your fifth pregnancy, how many babies were you carrying?
1
2 (twins)
3 or more (triplets or more)
Do not read:
I don’t know
I prefer not to answer
What was the outcome(s) of the pregnancy? If you carried more than one baby, please check all that apply.
Baby was born alive at less than 37 weeks of pregnancy (early or preterm)
Baby was born alive at 37 weeks or later (term)
Miscarriage (fetal loss) before 20 weeks of pregnancy
Stillbirth (fetal loss) at 20 weeks of pregnancy or later
Abortion (pregnancy medically ended for any reason)
Do not read:
I don’t know
I prefer not to answer
When did this pregnancy end?
_ _ / _ _ _ _ (mm/yyyy)
Do not read:
I don’t know
I prefer not to answer
The following questions are about the first time you were pregnant.
How old were you when you became pregnant with your first pregnancy?
____
years
Do not read:
I don’t know
I prefer not to answer
Did you or your partner use any of the following assisted technologies to get pregnant with your first pregnancy? Please indicate all that apply
Hormone therapy or medications
In-vitro fertilization (IVF)
Pre-implantation diagnosis. (Genetic testing of the embryo before implantation following IVF)
Artificial insemination with your partner’s sperm
Artificial insemination with donor sperm
Drugs to improve ovulation
Surgery to correct blocked tubes
Treatment for varicocele
Other types of medical help
Do not read:
I don’t know
I prefer not to answer
Did you have any of the following problems with your first pregnancy? Please indicate all that apply.
No problems
Gestational Hypertension (high blood pressure that started during this pregnancy)
Pre-eclampsia or eclampsia
Significant bleeding with delivery
Significant bleeding while pregnant
Infection
Gestational diabetes (diabetes that started during this pregnancy)
Too much amniotic fluid
Too little amniotic fluid
Labor pains more than 3 weeks before my baby was due (preterm or early labor)
Water
broke more than 3 weeks before your baby was due (preterm premature
rupture of membranes or PPROM)Bad reaction to the anesthetic used during delivery
Do not read:
If respondent’s first pregnancy did not end in a live birth (Q78), please go to question 91.
How was your first baby delivered?
Unassisted vaginal delivery
Assisted vaginal delivery (forceps or vacuum extraction)
Planned cesarean section
Unplanned cesarean section, including emergency C-section
Do not read:
I don’t know
I prefer not to answer
Did your first baby have any of the following problems?
Born too small (Low birth weight)
Died before she/he was 1 month old
Neither of these problems
Do not read:
I don’t know
I prefer not to answer
The next questions are about how your muscular dystrophy symptoms changed during your first pregnancy.
For each of the following symptoms of muscular dystrophy, please tell me how the symptom changed during your first pregnancy.
During your pregnancy, was your muscle weakness
Worse
Better
About the same
Did not have muscle weakness before or during pregnancy
Do not read:
During your pregnancy, was your muscle pain
Worse
Better
About the same
Did not have pain before or during pregnancy
Do not read:
During your pregnancy, were your muscle cramps
Worse
Better
About the same, or
Did not have muscle cramps before or during pregnancy
Do not read:
I don’t know
I prefer not to answer
During your pregnancy, was any difficulty you had walking
Worse
Better
About the same, or
Did not have difficulty walking before or during pregnancy
Do not read:
I don’t know
I prefer not to answer
During your pregnancy, did you need more help with daily activities?
Do not read:
Yes
NoAbout the same
Did not need help with daily activities before or during my pregnancy
I don’t know
I prefer not to answer
Now, please tell me how each of the following symptoms of muscular dystrophy changed after your first pregnancy ended compared to your symptoms during the pregnancy.
After your pregnancy ended, was your muscle weakness
Worse
Better
About the same, or
Did not have muscle weakness before, during or after pregnancy
Do not read:
I don’t know
I prefer not to answer
After your pregnancy ended, was your muscle pain
Worse
Better
About the same
Did not have pain before, during or after pregnancy
Do not read:
I don’t know
I prefer not to answer
After your pregnancy ended, were your muscle cramps
Worse
Better
About the same. or
Did not have muscle cramps before, during or after pregnancy
Do not read:
I don’t know
I prefer not to answer
After your pregnancy ended, was any difficulty you had walking
Worse
Better
About the same. or
Did not have difficulty walking before, during or after pregnancy
Do not read:
I don’t know
I prefer not to answer
After your pregnancy ended, did you need more help with daily activities than you did during your pregnancy?
Yes
No
About the same
Did not need help with daily activities before, during or after my pregnancy
Do not read:
I don’t know
I prefer not to answer
Did any symptoms related to muscular dystrophy in your first pregnancy affect your decision to have future pregnancies?
Yes
No
Do not read:
After your first pregnancy, did a doctor, nurse, or other health care worker tell you that you had depression?
Yes
No
Do not read:
I don’t know
I prefer not to answer
If the respondent only had one pregnancy, please go to question 119
The
following questions are about the most recent or last time you were
pregnant.
How old were you when you became pregnant with your most recent pregnancy?
Do not read:
_______ years
I don’t know
I prefer not to answer
Did you or your partner use any of the following assistive technologies to get pregnant with your most recent pregnancy? Please check ALL that apply.
No assistance needed
Hormone therapy or medications
In-vitro fertilization (IVF)
Pre-implantation diagnosis. (Genetic testing of the embryo before implantation following IVF)
Artificial insemination with your partner’s sperm
Artificial insemination with donor sperm
Drugs to improve ovulation
Surgery to correct blocked tubes
Treatment for varicocele
Other types of medical help
Do not read:
I don’t know
I prefer not to answer
Did you have any of the following problems with your most recent pregnancy? Please check all that apply.
No problems
Gestational Hypertension (high blood pressure that started during this pregnancy)
Pre-eclampsia or eclampsia
Significant bleeding with delivery
Significant bleeding while pregnant
Infection
Gestational diabetes (diabetes that started during this pregnancy)
Too much amniotic fluid
Too little amniotic fluid
Labor pains more than 3 weeks before my baby was due (preterm or early labor)
Water broke more than 3 weeks before your baby was due (preterm premature rupture of membranes or PPROM)
Bad reaction to the anesthetic used during delivery
Do not read:
I don’t know
I prefer not to answer
If the participant’s last pregnancy did not end in a live birth, go to question 119.
Did your most recent baby have any of the following problems?
Born too small (Low birth weight)
Died before she/he was 1 month old
Neither of these problems
Do not read:
I don’t know
I prefer not to answer
How was your most recent baby delivered?
Unassisted vaginal delivery
Assisted vaginal delivery (forceps or vacuum extraction)
Planned cesarean section
Unplanned cesarean section, including emergency C-section
Do not read:
I don’t know
I prefer not to answer
The next questions are about if and how your muscular dystrophy symptoms changed during your last pregnancy.
For each of the following symptoms, please tell me how the symptom changed during your most recent pregnancy compared to right before your most recent pregnancy.
During
your pregnancy, was your muscle weakness
Worse
Better
About the same, or
Did not have muscle weakness before or during pregnancy
Do not read:
I don’t know
I prefer not to answer
During your pregnancy, was your muscle pain
Worse
Better
About the same, or
Did not have pain before or during pregnancy
Do not read:
I don’t know
I prefer not to answer
During your pregnancy, were your muscle cramps
Worse
Better
About the same, or
Did not have muscle cramps before or during pregnancy
Do not read:
I don’t know
I prefer not to answer
During your pregnancy, was any difficulty you had walking
Worse
Better
About the same, or
Did not have difficulty walking before or during pregnancy
Do not read:
I don’t know
I prefer not to answer
During your pregnancy, did you need more help with daily activities?
Yes
No
About the same, or
Did
not need help with daily activities before or during my pregnancy
Do not read:
I don’t know
I prefer not to answer
Now, please tell me how each of the following symptoms changed after your most recent pregnancy ended compared to your symptoms during your most recent pregnancy.
Worse
Better
About the same, or
Did not have muscle weakness before, during or after pregnancy
Do not read:
I don’t know
I prefer not to answer
After your most recent pregnancy ended, was your muscle pain
Worse
Better
About the same, or
Did not have pain before, during or after pregnancy
Do not read:
I don’t know
I prefer not to answer
After your most recent pregnancy ended, were your muscle cramps
Worse
Better
About the same, or
Did not have muscle cramps before, during or after pregnancy
Do not read:
I don’t know
I prefer not to answer
After your most recent pregnancy ended, was any difficulty you had walking
Worse
Better
About the same, or
Did not have difficulty walking before, during or after pregnancy
Do not read:
I don’t know
I prefer not to answer
After your most recent pregnancy, did you need more help with daily activities than you did during your pregnancy?
Yes
No
About
the same, orDid not need help with daily activities before, during or after my pregnancy
I don’t know
I prefer not to answer
After your most recent baby was born or your most recent pregnancy ended, did a doctor, nurse, or other health care worker tell you that you had depression?
Do not read:
Yes
No
I don’t know
I prefer not to answer
Please tell us anything else about your experience with pregnancy or family planning.
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
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.
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 20 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
| File Type | application/vnd.openxmlformats-officedocument.wordprocessingml.document |
| Author | Zimmerman, Jamie F. (CDC/DDNID/NCBDDD/DBDID) (CTR) |
| File Modified | 0000-00-00 |
| File Created | 2023-08-26 |
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