Mental Health in the Pompe Disease Community
Pompe Alliance, in collaboration with RAM and MyRaredata, is gathering input on the mental health needs of the Pompe community. Results from this survey will be analyzed and used as input to formulate suggestions for the improvement of mental health support for people living with Pompe, their caregivers and loved ones. The information collected in this survey is strictly confidential and will only be used in aggregate for the purposes of understanding the mental health needs of the community.
Which of the following best describes you?
*
Person diagnosed with Pompe Disease
Caregiver or care partner
Please provide your age in years:
*
What was your biological classification at birth?
*
Female
Male
Other (e.g., intersex)
Prefer not to answer
What is your current gender?
*
Woman
Man
Transgender woman
Transgender man
Non-binary person
Prefer not to answer
What is your racial classification? Select ALL that apply
*
Native American
Asian
Black
White
Don’t know/Not sure
Prefer not to answer
Other [Specify]
What is your ethnicity? Select ALL that apply.
*
Hispanic or Latino
Non-Hispanic Caribbean American
African American
Alaska Native
Native Hawaiian or other Pacific Islander
Asian American
Cajun
Caucasian
Middle Eastern
Don’t know/Not sure
Prefer not to answer
Other [Specify]
Which category BEST describes the highest level of education that you have acquired? Select ONE answer
*
No schooling completed
Grade school (e.g., completed up to Grade 8)
Some high school, no high school degree
High school graduate or GED
Professional Trade Certification, no college degree
Some college, no college degree
Associate degree (e.g., AA, AS, etc.)
Bachelor’s degree (e.g., BA, BS, etc.)
Some post-graduate studies, no post-graduate degree
Master’s degree and/or Doctoral degree
Do you know when you were diagnosed with Pompe Disease?
*
Yes
No
Year of diagnosis
*
What terms do you associate with and/or prefer? Select ALL that apply
*
Disabled Person
Crippled Person
Differently-abled Person
Handicapped Person
Person with disability
Person with handicap
Handicapable
Other
How satisfied are you with executing the daily life activities? (1=Completely dissatisfied, 5=Completely satisfied)
*
Completely dissatisfied
1
2
3
4
Completely satisfied
5
1 is Completely dissatisfied, 5 is Completely satisfied
What are the symptoms that you experience? Select ALL that apply
*
Frequent respiratory infections
Respiratory failure/insufficiency
Diaphragm weakness
Sleep-disordered breathing
Orthopnea (Shortness of breath while lying flat)
Dyspnea (Difficult or laboured breathing)
Aspiration
Cardiac Issues
Cardiomegaly (enlarged heart)
Progressive cardiomyopathy (abnormally enlarged, thickened, and/or stiffened heart)
Macroglossia (enlarged tongue)
Hepatomegaly (enlarged liver)
Difficulty chewing/jaw muscle fatigue
Poor weight gain/maintenance
Swallowing difficulties/weak tongue
Gastroesophageal reflux
Fecal incontinence
Proximal muscle weakness
Profound hypotonia
Delayed motor milestones
Muscle pain
Frequent falls
Gait abnormalities
Difficulty walking/climbing stairs/getting up
EMG abnormalities
Elevated CK
MRI changes
Scoliosis/scapular winging
Other
Have you ever felt suicidal because of your physical health?
*
Yes
No
Have you used any of the following on a regular basis [check all that apply]?
*
Non-prescribed illicit substances
Alcohol
Cannabis and/or Cannabis-derived products
None of the above
Have you been diagnosed with a mental health condition by a healthcare professional?
*
Yes
No
What mental health conditions have you been diagnosed with? Select ALL that apply
*
Depression
Anxiety disorders
Phobias
PTSD
Sleep disorders
Eating disorders
Obsessive-compulsive disorder (OCD)
Substance use disorders
Bipolar disorders
Schizophrenia
Sexual disorders
Personality disorders
Other
When you were diagnosed with pompe disease, was a mental health provider recommended as a part of your care team?
*
Yes
No
Have you seen or are you currently seeing a mental health therapist?
*
Yes
No
How helpful do you feel seeing a mental health specialist has been for your care?
*
1
2
3
4
5
Why have you not sought out mental health therapy?
*
How willing are you to receive mental health therapy?
*
Highly unlikely
1
2
3
4
Highly likely
5
1 is Highly unlikely, 5 is Highly likely
What would you want a mental health therapist to understand about your experience with Pompe disease?
*
How satisfied are you with your overall mental healthcare?
*
1
2
3
4
5
Please provide your age in years:
*
Date of birth of your loved ones diagnosed with Pompe Disease
*
-
Month
-
Day
Year
Date
Your date of birth
*
-
Month
-
Day
Year
Date
What was your biological classification at birth?
*
Female
Male
Other (e.g., intersex)
Prefer not to answer
What is your current gender?
*
Woman
Man
Transgender woman
Transgender man
Non-binary person
Prefer not to answer
What is your racial classification? Select ALL that apply
*
Native American
Asian
Black
White
Don’t know/Not sure
Prefer not to answer
Other [Specify]
What is your ethnicity? Select ALL that apply.
*
Hispanic or Latino
Non-Hispanic Caribbean American
African American
Alaska Native
Native Hawaiian or other Pacific Islander
Asian American
Cajun
Caucasian
Middle Eastern
Don’t know/Not sure
Prefer not to answer
Other [Specify]
Which category BEST describes the highest level of education that you have acquired? Select ONE answer
*
No schooling completed
Grade school (e.g., completed up to Grade 8)
Some high school, no high school degree
High school graduate or GED
Professional Trade Certification, no college degree
Some college, no college degree
Associate degree (e.g., AA, AS, etc.)
Bachelor’s degree (e.g., BA, BS, etc.)
Some post-graduate studies, no post-graduate degree
Master’s degree and/or Doctoral degree
How many loved ones do you care for that have been diagnosed with Pompe Disease?
*
1
2
3
4
Please provide the age of your loved one in years:
*
Year of diagnosis of your loved one
*
Please provide the age of your loved one number 1 in years:
*
Year of diagnosis for loved one number 1
*
Please provide the age of your loved one number 2 in years:
*
Year of diagnosis for loved one number 2
*
Please provide the age of your loved one number 3 in years:
*
Year of diagnosis for loved one number 3
*
Please provide the age of your loved one number 4 in years:
*
Year of diagnosis for loved one number 4
*
Year of diagnosis
*
Year of diagnosis for loved one number 1
*
Year of diagnosis for loved one number 2
*
Year of diagnosis for loved one number 3
*
Year of diagnosis for loved one number 4
*
What are the symptoms that your loved one diagnosed with Pompe disease experience? Select ALL that apply
*
Frequent respiratory infections
Respiratory failure/insufficiency
Diaphragm weakness
Sleep-disordered breathing
Orthopnea (Shortness of breath while lying flat)
Dyspnea (Difficult or laboured breathing)
Aspiration
Cardiac Issues
Cardiomegaly (enlarged heart)
Progressive cardiomyopathy (abnormally enlarged, thickened, and/or stiffened heart)
Macroglossia (enlarged tongue)
Hepatomegaly (enlarged liver)
Difficulty chewing/jaw muscle fatigue
Poor weight gain/maintenance
Swallowing difficulties/weak tongue
Gastroesophageal reflux
Fecal incontinence
Proximal muscle weakness
Profound hypotonia
Delayed motor milestones
Muscle pain
Frequent falls
Gait abnormalities
Difficulty walking/climbing stairs/getting up
EMG abnormalities
Elevated CK
MRI changes
Scoliosis/scapular winging
Other
What is your relationship to your loved one diagnosed with Pompe disease?
*
Parent/Guardian
Sibling
Partner
Other
How satisfied are you with executing the daily life activities? (1=Completely dissatisfied, 5=Completely satisfied)
*
Completely dissatisfied
1
2
3
4
Completely satisfied
5
1 is Completely dissatisfied, 5 is Completely satisfied
Have you ever felt suicidal?
*
Yes
No
Have you used any of the following on a regular basis? Select ALL that apply
*
Non-prescribed illicit substances
Alcohol
Cannabis and/or Cannabis-derived products
None of the above
Have you been diagnosed with mental health conditions?
*
Yes
No
What mental health conditions have you been diagnosed with? Select ALL that apply
*
Depression
Anxiety disorders
Phobias
PTSD
Sleep disorders
Eating disorders
Obsessive-compulsive disorder (OCD)
Substance use disorders
Bipolar disorders
Schizophrenia
Sexual disorders
Personality disorders
Other
When your loved ones were diagnosed, was a mental health provider recommended as a part of their care team?
*
Yes
No
Have you seen or are you currently seeing a mental health therapist?
*
Yes
No
How satisfied are you with your loved one’s mental healthcare?
*
1
2
3
4
5
How willing are you to receive mental health therapy?
*
Highly unlikely
1
2
3
4
Highly likely
5
1 is Highly unlikely, 5 is Highly likely
Why have you not sought out mental health support?
*
What type of things do you need to do for your loved one as a caregiver?
*
What would you want a mental health therapist to understand about your experience as a caregiver to a person diagnosed with Pompe disease?
*
Are you interested in being contacted to participate in future research related to Pompe Disease?
*
Yes
No
Name
*
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Last Name
Email
*
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Street Address
Street Address Line 2
City
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