Women Living with Muscular Dystrophy Survey (paper)

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

Attachment D_MD STARnet Women Living with MD Survey

OMB: 0920-1405

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Women Living with Muscular Dystrophy Survey

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INTRODUCTION




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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

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 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)



Shape3

INSTRUCTIONS



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Mark your answer by completely filling in the circle or marking an X in the box to the left of your answer.

Shape6 Shape5 Shape7

A doctor or health care provider

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A family member


Use a black or blue pen, if available.



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START HERE

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



  1. What is your ethnicity?

  • Hispanic or Latino

  • Not Hispanic or Latino



  1. 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



  1. Are you currently attending a school or college?

  • Yes

  • No

  • I don’t know

  • I prefer not to answer



  1. 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











Shape10



  1. Do you own or rent your home?

  • Own

  • Rent

  • Other arrangement

  • I don’t know

  • I prefer not to answer



  1. 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

  • Other, please specify: _____________

  • 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

  • I don’t know

  • I prefer not to answer



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

  • $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 don’t know

  • I prefer not to answer

Shape11 The following questions are about COVID-19 and influenza.


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

  • Yes

  • No Go to question 13

  • 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

  • I don’t know

  • I prefer not to answer



  1. 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


  1. 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


  1. Have you received a COVID-19 vaccine?

  • Yes Go to question 15

  • No

  • I don’t know Go to 15

  • I prefer not to answer Go to 15








Shape12


  1. What are the reasons you have not received a COVID-19 vaccine? (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 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, specify:____________________

  • I don’t know

  • I prefer not to answer


  1. Have you ever received a flu vaccine?

  • Yes

  • No Go to question 17

  • 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

  • I don’t know Go to 18

  • I prefer not to answer Go to 18


  1. 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

Shape13


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?

  • ________ 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

  • I don’t know

  • I prefer not to answer


  1. 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


  1. 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





Shape14 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

  • 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

  • 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 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


  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

  • I don’t know Go to 28

  • I prefer not to answer Go to 28




  1. Shape15 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

  • 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 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


  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

  • 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

  • I don’t know

  • I prefer not to answer







  1. Shape16 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


  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

  • 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

  • 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 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



  1. Shape17 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

  • 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

  • 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 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


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

  • Yes

  • No Go to question 41

  • I don’t know Go to 41

I prefer not to answer Go to 41


  1. Shape18 What other methods or therapies do you use?

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

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  • 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


  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

  • 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.


  1. 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


  1. 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



  1. Shape20 What is your level of pain right now?

  • No pain

  • Mild

  • Moderate

  • Severe

  • Very severe

  • I don’t know

  • I prefer not to answer


Shape21

The following questions are about COVID-19 and influenza.

The next questions are about the impact of pain on your activities. For each item, please mark 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

  • I don’t know

  • I prefer not to answer


  1. 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


  1. 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


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

  • Not at all

  • A little bit

  • Somewhat

    Shape22
  • Quite a bit

  • Very much

  • 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?

  • Not at all

  • A little bit

  • Somewhat

  • Quite a bit

  • Very much

  • 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

  • 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

  • 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

  • I don’t know

  • I prefer not to answer





Shape23 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.


  1. I felt exhausted.

  • Never

  • Rarely

  • Sometimes

  • Often

  • Always

  • I don’t know

  • I prefer not to answer


  1. I felt like I had no energy.

  • Never

  • Rarely

  • Sometimes

  • Often

  • Always

  • I don’t know

  • I prefer not to answer


  1. I felt fatigued.

  • Never

  • Rarely

  • Sometimes

  • Often

  • Always

  • I don’t know

  • I prefer not to answer


  1. I was too tired to do my household chores.

  • Never

  • Rarely

  • Sometimes

  • Often

  • Always

  • I don’t know

  • I prefer not to answer








  1. Shape24 I was too tired to leave the house.

  • Never

  • Rarely

  • Sometimes

  • Often

  • Always

  • I don’t know

  • I prefer not to answer


  1. 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


  1. I felt tired.

  • Never

  • Rarely

  • Sometimes

  • Often

  • Always

  • I don’t know

  • I prefer not to answer


  1. I had to limit my social activity because I was tired.

  • Never

  • Rarely

  • Sometimes

  • Often

  • Always

  • I don’t know

  • I prefer not to answer


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



  1. Shape25 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


  1. Shape26 Please tell us anything else about your experience with pain or fatigue.

The next questions are about your experience family planning.


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

_______

  • 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

  • I don’t know Go to 66

  • I prefer not to answer Go to 66


  1. Shape27 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


  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: ____________________

________________________________


  • I don’t know

  • I prefer not to answer

  1. Have you ever been pregnant?

  • Yes

  • No

  • I don’t know

  • I prefer not to answer

  1. 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

  1. 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

  • Shape28 I prefer not to answer

  1. Shape29 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.

  1. 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

  1. 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.

  1. 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

  1. Shape30 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.

  1. 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

  1. 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

  1. When did this pregnancy end?

_ _ / _ _ _ _ (mm/yyyy)

  • I don’t know

  • I prefer not to answer

If you only had two pregnancies, please go to question 86.

  1. 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

  1. Shape31 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

  1. 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.

  1. 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

  1. 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

  • Shape32 Abortion (pregnancy medically ended for any reason)

  • I don’t know

  • I prefer not to answer

  1. 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.

  1. 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

  1. 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

  1. 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.

  1. Shape33 Shape34 How old were you when you became pregnant with your first pregnancy?

____ years

  • I don’t know

  • I prefer not to answer

  1. Did you or your partner use any of the following assisted technologies to get pregnant with your first 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

  1. 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

    Shape35
  • 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 first pregnancy did not end in a live birth, please go to question 91.

  1. 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

  1. 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

  • 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.

  1. During your pregnancy, was your muscle weakness

  • Worse

  • Better

  • About the same

  • Did not have muscle weakness before or during pregnancy

  • I don’t know

  • I prefer not to answer

  1. Shape37 Shape36 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

  1. 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

  1. 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

  1. 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.

  1. Shape38 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

  1. 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

  1. 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

  1. 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







  1. Shape39 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

  • I prefer not to answer

  1. Did any symptoms related to muscular dystrophy in your first pregnancy affect your decision to have future pregnancies?

  • Yes

  • No

  • I don’t know

  • I prefer not to answer

  1. 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.

  1. How old were you when you became pregnant with your most recent pregnancy?

_______ years

  • I don’t know

  • I prefer not to answer

  1. 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)

  • Shape40 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

  1. 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.]

  1. 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

  • Shape41 I don’t know

  • I prefer not to answer

  1. 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.

  1. During your pregnancy, was your muscle weakness

  • Worse

  • Better

  • About the same

  • Did not have muscle weakness before or during pregnancy

  • I don’t know

  • I prefer not to answer

  1. During your pregnancy, was your muscle pain

  • Worse

  • Better

  • About the same

  • Did not have pain before or during pregnancy

  • I don’t know

  • Shape42 I prefer not to answer

  1. 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

  1. 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

  1. 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

























Shape43 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.

  1. After your most recent 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

  1. 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

  1. Shape44 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

  1. 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

  1. Shape45 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

  1. 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



  1. Please tell us anything else about your experience with pregnancy or family planning.

Shape46

  1. Did anyone help you fill out this survey?

  • Yes

  • No end

  • I prefer not to answer end

  1. 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 1/17 F

File Typeapplication/vnd.openxmlformats-officedocument.wordprocessingml.document
AuthorZimmerman, Jamie F. (CDC/DDNID/NCBDDD/DBDID) (CTR)
File Modified0000-00-00
File Created2023-09-02

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