Mental Health in the Pompe Disease Community

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 DiseaseCaregiver or care partner
Please provide your age in years:*
What was your biological classification at birth?*

FemaleMaleOther (e.g., intersex)Prefer not to answer
What is your current gender?*

WomanManTransgender womanTransgender manNon-binary personPrefer not to answer
What is your racial classification? Select ALL that apply*

Native AmericanAsianBlackWhiteDon’t know/Not surePrefer not to answerOther [Specify]
What is your ethnicity? Select ALL that apply.*

Hispanic or LatinoNon-Hispanic Caribbean AmericanAfrican AmericanAlaska NativeNative Hawaiian or other Pacific IslanderAsian AmericanCajunCaucasianMiddle EasternDon’t know/Not surePrefer not to answerOther [Specify]
Which category BEST describes the highest level of education that you have acquired? Select ONE answer*

No schooling completedGrade school (e.g., completed up to Grade 8)Some high school, no high school degreeHigh school graduate or GEDProfessional Trade Certification, no college degreeSome college, no college degreeAssociate degree (e.g., AA, AS, etc.)Bachelor’s degree (e.g., BA, BS, etc.)Some post-graduate studies, no post-graduate degreeMaster’s degree and/or Doctoral degree
Do you know when you were diagnosed with Pompe Disease?*

YesNo
Year of diagnosis*
What terms do you associate with and/or prefer? Select ALL that apply*

Disabled PersonCrippled PersonDifferently-abled PersonHandicapped PersonPerson with disabilityPerson with handicapHandicapableOther
How satisfied are you with executing the daily life activities? (1=Completely dissatisfied, 5=Completely satisfied)*

1

2

3

4

5

1 is Completely dissatisfied, 5 is Completely satisfied
What are the symptoms that you experience? Select ALL that apply*

Frequent respiratory infectionsRespiratory failure/insufficiencyDiaphragm weaknessSleep-disordered breathingOrthopnea (Shortness of breath while lying flat)Dyspnea (Difficult or laboured breathing)AspirationCardiac IssuesCardiomegaly (enlarged heart)Progressive cardiomyopathy (abnormally enlarged, thickened, and/or stiffened heart)Macroglossia (enlarged tongue)Hepatomegaly (enlarged liver)Difficulty chewing/jaw muscle fatiguePoor weight gain/maintenanceSwallowing difficulties/weak tongueGastroesophageal refluxFecal incontinenceProximal muscle weaknessProfound hypotoniaDelayed motor milestonesMuscle painFrequent fallsGait abnormalitiesDifficulty walking/climbing stairs/getting upEMG abnormalitiesElevated CKMRI changesScoliosis/scapular wingingOther
Have you ever felt suicidal because of your physical health?*

YesNo
Have you used any of the following on a regular basis [check all that apply]?*

Non-prescribed illicit substancesAlcoholCannabis and/or Cannabis-derived productsNone of the above
Have you been diagnosed with a mental health condition by a healthcare professional?*

YesNo
What mental health conditions have you been diagnosed with? Select ALL that apply*

DepressionAnxiety disordersPhobiasPTSDSleep disordersEating disordersObsessive-compulsive disorder (OCD)Substance use disordersBipolar disordersSchizophreniaSexual disordersPersonality disordersOther
When you were diagnosed with pompe disease, was a mental health provider recommended as a part of your care team?*

YesNo
Have you seen or are you currently seeing a mental health therapist?*

YesNo
How helpful do you feel seeing a mental health specialist has been for your care? *
Why have you not sought out mental health therapy? *
How willing are you to receive mental health therapy?*

1

2

3

4

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?*
Please provide your age in years:*
Date of birth of your loved ones diagnosed with Pompe Disease*

MonthDayYear
Date
Your date of birth*

MonthDayYear
Date
What was your biological classification at birth?*

FemaleMaleOther (e.g., intersex)Prefer not to answer
What is your current gender?*

WomanManTransgender womanTransgender manNon-binary personPrefer not to answer
What is your racial classification? Select ALL that apply*

Native AmericanAsianBlackWhiteDon’t know/Not surePrefer not to answerOther [Specify]
What is your ethnicity? Select ALL that apply.*

Hispanic or LatinoNon-Hispanic Caribbean AmericanAfrican AmericanAlaska NativeNative Hawaiian or other Pacific IslanderAsian AmericanCajunCaucasianMiddle EasternDon’t know/Not surePrefer not to answerOther [Specify]
Which category BEST describes the highest level of education that you have acquired? Select ONE answer*

No schooling completedGrade school (e.g., completed up to Grade 8)Some high school, no high school degreeHigh school graduate or GEDProfessional Trade Certification, no college degreeSome college, no college degreeAssociate degree (e.g., AA, AS, etc.)Bachelor’s degree (e.g., BA, BS, etc.)Some post-graduate studies, no post-graduate degreeMaster’s degree and/or Doctoral degree
How many loved ones do you care for that have been diagnosed with Pompe Disease?*

1234
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 infectionsRespiratory failure/insufficiencyDiaphragm weaknessSleep-disordered breathingOrthopnea (Shortness of breath while lying flat)Dyspnea (Difficult or laboured breathing)AspirationCardiac IssuesCardiomegaly (enlarged heart)Progressive cardiomyopathy (abnormally enlarged, thickened, and/or stiffened heart)Macroglossia (enlarged tongue)Hepatomegaly (enlarged liver)Difficulty chewing/jaw muscle fatiguePoor weight gain/maintenanceSwallowing difficulties/weak tongueGastroesophageal refluxFecal incontinenceProximal muscle weaknessProfound hypotoniaDelayed motor milestonesMuscle painFrequent fallsGait abnormalitiesDifficulty walking/climbing stairs/getting upEMG abnormalitiesElevated CKMRI changesScoliosis/scapular wingingOther
What is your relationship to your loved one diagnosed with Pompe disease?*

Parent/GuardianSiblingPartnerOther
How satisfied are you with executing the daily life activities? (1=Completely dissatisfied, 5=Completely satisfied)*

1

2

3

4

5

1 is Completely dissatisfied, 5 is Completely satisfied
Have you ever felt suicidal?*

YesNo
Have you used any of the following on a regular basis? Select ALL that apply*

Non-prescribed illicit substancesAlcoholCannabis and/or Cannabis-derived productsNone of the above
Have you been diagnosed with mental health conditions?*

YesNo
What mental health conditions have you been diagnosed with? Select ALL that apply*

DepressionAnxiety disordersPhobiasPTSDSleep disordersEating disordersObsessive-compulsive disorder (OCD)Substance use disordersBipolar disordersSchizophreniaSexual disordersPersonality disordersOther
When your loved ones were diagnosed, was a mental health provider recommended as a part of their care team?*

YesNo
Have you seen or are you currently seeing a mental health therapist?*

YesNo
How satisfied are you with your loved one’s mental healthcare?*
How willing are you to receive mental health therapy?*

1

2

3

4

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?*

YesNo
Name*

First NameLast Name
Email*
example@example.com
Country of Residence*

Street Address

Street Address Line 2

CityState / Province

Postal / Zip CodeCountry
Phone Number*

Area CodePhone Number
Should be Empty: