Form Approved
OMB No. 0920-New
Expiration Date: XX/XX/XXXX
Women Living with Muscular Dystrophy Survey
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 the Centers for
Disease Control and Prevention and the members of the Muscular
Dystrophy Surveillance, Research and Tracking Network (MD STARnet).
Additional information on MD STARnet
can be found at the following
links:
https://www.cdc.gov/ncbddd/musculardystrophy/research.html
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!
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)
Mark your answer by completely filling in the circle or marking an X in the box to the left of your answer.
A doctor or health care provider
A family member
Use a black or blue pen, if available.
START HERE
What is your ethnicity?
Hispanic or Latino
Not Hispanic or Latino
What race do you identify with?
Please
check all that apply.
American Indian/Alaskan Native
Asian
Black or African American
Native Hawaiian or Pacific Islander
White
Other
Yes
No
I don’t know
I prefer not to answer
What is the highest level of education you completed?
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
I don’t know
I prefer not to answer
Do you own or rent your home?
What is your current employment status?
Employed for wages Go to Next Question
Self-employed Go to Next Question
Out of work for a year or more
Out of work for less than a year
Homemaker
Student
Retired
Unable to work
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
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
I prefer not to answer
The following questions are about COVID-19 and influenza.
To your knowledge, have you had COVID-19?
Yes, confirmed by test
No, not confirmed by test
I don’t know
I prefer not to answer
Describe the level of care you received.
Did not seek medical care
Received medical care but was not hospitalized
Was hospitalized
I don’t know
I prefer not to answer
How would you characterize your symptoms?
No symptoms
Mild (e.g., low-grade fever, cough, shortness of breath)
Moderate (e.g., moderate difficulty breathing, body aches, fatigue)
Severe (e.g., severe difficulty breathing, persistent pain, inability to stay awake)
I don’t know
I prefer not to answer
Have you received a COVID-19 vaccine?
What are the reasons you have not received a COVID-19 vaccine? (Check all that apply)
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, specify:____________________
I don’t know
I prefer not to answer
Did you receive the flu vaccine any time in the last 12 months?
Yes Go to question 18
No
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? (Check all that apply)
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, specify: ___________________
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?
________ 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
I don’t know
I prefer not to answer
What time of day is your pain the worst? Check all that apply.
Morning
Afternoon
Evening/night
I don’t know
I prefer not to answer
Where in your body do you typically have pain?
Check all that apply.
Head
Neck
Shoulders
Arms
Back
Chest
Stomach
Hips
Legs
Feet
Other, specify: ___________________
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?
Every day
2-6 days per week
Once a week
Once a month
Not in the last month
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 I can manage my normal activities
Provide some relief but not enough that I can resume normal activities
Provide little or no pain relief
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?
Every day
2-6 days per week
Once a week
Once a month
Not in the last month
I don’t know
I prefer not to answer
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
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
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
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
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?
Every day
2-6 days per week
Once a week
Once a month
Not in the last month
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 I can manage my normal activities
Provide some relief but not enough that I can resume normal activities
Provide little or no pain relief
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?
Every day
2-6 days per week
Once a week
Once a month
Not in the last month
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 I can manage my normal activities
Provide some relief but not enough that I can resume normal activities
Provide little or no pain relief
I don’t know
I prefer not to answer
Do you use any other method or therapy to manage your pain?
I prefer not to answer Go to 41
What other methods or therapies do you use?
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
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
I don’t know
I prefer not to answer
The next questions ask about the intensity of your pain. For each item, please mark 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?
No pain
Mild
Moderate
Severe
Very severe
I don’t know
I prefer not to answer
In the past 7 days, how intense was your average pain?
No pain
Mild
Moderate
Severe
Very severe
I don’t know
I prefer not to answer
What is your level of pain right now?
No pain
Mild
Moderate
Severe
Very severe
I don’t know
I prefer not to answer
The following
questions are about COVID-19 and influenza.
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
I don’t know
I prefer not to answer
In the past 7 days, how much did pain interfere with work around the home?
Not at all
A little bit
Somewhat
Quite a bit
Very much
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?
Not at all
A little bit
Somewhat
Quite a bit
Very much
I don’t know
I prefer not to answer
In the past 7 days, how much did pain interfere with your household chores?
Not at all
A little bit
Somewhat
Quite a bit
Very much
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?
Not at all
A little bit
Somewhat
Quite a bit
Very much
I don’t know
I prefer not to answer
In the past 7 days, how much did pain interfere with your enjoyment of life?
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
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 each of the following statements true? Please respond to each statement by marking the best answer.
I felt exhausted.
Never
Rarely
Sometimes
Often
Always
I don’t know
I prefer not to answer
I felt like I had no energy.
Never
Rarely
Sometimes
Often
Always
I don’t know
I prefer not to answer
I felt fatigued.
Never
Rarely
Sometimes
Often
Always
I don’t know
I prefer not to answer
I was too tired to do my household chores.
Never
Rarely
Sometimes
Often
Always
I don’t know
I prefer not to answer
I was too tired to leave the house.
Never
Rarely
Sometimes
Often
Always
I don’t know
I prefer not to answer
I was frustrated by being too tired to do the things I wanted to do.
Never
Rarely
Sometimes
Often
Always
I don’t know
I prefer not to answer
I felt tired.
Never
Rarely
Sometimes
Often
Always
I don’t know
I prefer not to answer
I had to limit my social activity because I was tired.
If your 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 check all that apply.
Stimulants
Exercise
Coffee and/or other caffeine containing beverages
Prescription medications
Non-prescription medications
Dietary Supplements
Sleep
Herbal remedies
Other, specify __________________
I don’t know
I prefer not to answer
Please tell us anything else about your experience with pain or fatigue.
The next questions are about your experience family planning.
At what age were you diagnosed with muscular dystrophy?
_______
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?
When did you talk with the genetic counselor or medical provider?
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
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 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: ____________________
________________________________
I don’t know
I prefer not to answer
Have you ever been pregnant?
Did you ever have trouble getting pregnant or were unable to get pregnant?
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?
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?
Yes
No
I don’t know
I prefer not to answer
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?
______ times
I don’t know
I prefer not to answer
In your first pregnancy, how many babies were you carrying?
1
2 (twins)
3 or more (triplets or more)
I don’t know
I prefer not to answer
If you have never been pregnant, skip to Q119.
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)
I don’t know
I prefer not to answer
When did this pregnancy end?
_ _ / _ _ _ _ (mm/yyyy)
I don’t know
I prefer not to answer
If you only had one pregnancy, please go to question 86.
In your second pregnancy, how many babies were you carrying?
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)
I don’t know
I prefer not to answer
When did this pregnancy end?
I don’t know
I prefer not to answer
If you only had two pregnancies, please go to question 86.
In your third pregnancy, how many babies were you carrying?
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)
I don’t know
I prefer not to answer
When did this pregnancy end?
_ _ / _ _ _ _ (mm/yyyy)
I don’t know
I prefer not to answer
If you only had three pregnancies, please go to question 86.
In your fourth pregnancy, how many babies were you carrying?
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)
I don’t know
I prefer not to answer
When did this pregnancy end?
_ _ / _ _ _ _ (mm/yyyy)
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)
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)
I don’t know
I prefer not to answer
When did this pregnancy end?
_ _ / _ _ _ _ (mm/yyyy)
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
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 check 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
I don’t know
I prefer not to answer
Did you have any of the following problems with your first 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
I don’t know
If your first pregnancy did not end in a live birth, 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
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
I don’t know
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
Better
About the same
Did not have muscle weakness before or during pregnancy
I don’t know
I prefer not to answer
During your pregnancy, was your muscle pain
Worse
Better
About the same
Did not have pain before or during pregnancy
I don’t know
During your pregnancy, were your muscle cramps
Worse
Better
About the same
Did not have muscle cramps before or during pregnancy
I don’t know
I prefer not to answer
During your pregnancy, was any difficulty you had walking
Worse
Better
About the same
Did not have difficulty walking before or during pregnancy
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
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
Did not have muscle weakness before, during or after pregnancy
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
I don’t know
I prefer not to answer
After your pregnancy ended, were your muscle cramps
Worse
Better
About the same
Did not have muscle cramps before, during or after pregnancy
I don’t know
I prefer not to answer
After your pregnancy ended, was any difficulty you had walking
Worse
Better
About the same
Did not have difficulty walking before, during or after pregnancy
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
I don’t know
Did any symptoms related to muscular dystrophy in your first pregnancy affect your decision to have future pregnancies?
After your first pregnancy, did a doctor, nurse, or other health care worker tell you that you had depression?
Yes
No
I don’t know
I prefer not to answer
If you 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?
_______ 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
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
I don’t know
I prefer not to answer
If your last pregnancy did not end in a live birth, please 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
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
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.
Worse
Better
About the same
Did not have muscle weakness before or during pregnancy
I don’t know
I prefer not to answer
During your pregnancy, was your muscle pain
Worse
Better
About the same
Did not have pain before or during pregnancy
I don’t know
I prefer not to answer
During your pregnancy, were your muscle cramps
Worse
Better
About the same
Did not have muscle cramps before or during pregnancy
I don’t know
I prefer not to answer
During your pregnancy, was any difficulty you had walking
Worse
Better
About the same
Did not have difficulty walking before or during pregnancy
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
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 changed after your most recent pregnancy ended compared to your symptoms during your most recent pregnancy.
Worse
Better
About the same
Did not have muscle weakness before, during or after pregnancy
I don’t know
I prefer not to answer
After your most recent pregnancy ended, was your muscle pain
Worse
Better
About the same
Did not have pain before, during or after pregnancy
I don’t know
I prefer not to answer
After your most recent pregnancy ended, were your muscle cramps
Worse
Better
About the same
Did not have muscle cramps before, during or after pregnancy
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
Did not have difficulty walking before, during or after pregnancy
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
Did 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?
Yes
No
I don’t know
I prefer not to answer
Please tell us anything else about your experience with pregnancy or family planning.
Did anyone help you fill out this survey?
Yes
No end
I prefer not to answer end
What is the relationship of the person who helped you fill out this survey?
___________________________
This is the end of the survey. 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.
I prefer not to answer end
Form Approved / OMB No. 0920-New / Exp. date xx/xx/XXXX
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 | 2023-09-02 |