Mental Health in the IgG4-Related Diseases Community

Mental Health in the IgG4-Related Diseases Community

IgG4-RD Life, in collaboration with Mental Health for Rare, is gathering input on the mental health needs of the IgG4-RD 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 IgG4-RD, 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.
Confidentiality & Voluntary Participation Statement

Thank you for considering participation in this survey. Your privacy and comfort are extremely important to us. Please read the following information before continuing:

Confidentiality
Your responses will be kept strictly confidential. The information you provide will be used solely for the purposes of this project and will not be shared with any external individuals or organizations. All data will be stored securely, and only authorized members of our team will have access to the results. No personally identifying information will be published or disclosed in any reports, presentations, or analysis.

Voluntary Participation
Your participation in this survey is entirely voluntary. You may choose whether or not to take part, and you may skip any question that you do not wish to answer. You may also withdraw from the survey at any time without any penalty or loss of benefits.

By completing and submitting the survey, you are indicating that you understand the information above and consent to participate voluntarily.

If you have any questions or concerns at any point, please contact us at admin@rare360.life.
Which of the following best describes you?*

Person diagnosed with IgG4-RDCaregiver or care partner
Please provide your age in years *
What was your biological classification at birth?*

FemaleMalePrefer not to answerIntersex (Please specify)
What is your current gender? *

WomanManTransgender womanTransgender manNon-binary personPrefer not to answerOther (Please specify)
What is your racial classification? Select ALL that apply*

Native AmericanAsianBlackWhiteDon’t know/Not surePrefer not to answerOther (Please 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 (Please 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 degreeOther (Please Specify)
Please select the month and year you were diagnosed with IgG4-RD from the drop-down. If you do not recall the exact date, please provide the best estimate.
Month*
Year*
How long did it take you to get your diagnosis (from symptom onset to diagnosis)? *

Within 6 months7-24 months2-5 years5-10 years10+ years
What terms do you associate with and/or prefer?*

Disabled PersonCrippled PersonDifferently-abled PersonHandicapped PersonPerson with disabilityPerson with handicapPerson with invisible disabilityOther (Please specify)
How satisfied are you with your activities of daily living? *

1

2

3

4

5

1 is Completely dissatisfied, 5 is Completely satisfied
What areas of your body are impacted by IgG4-RD (Select ALL that apply)?*

Central Nervous System (Head, Neck, CNS)Cardiovascular System (Heart)Pulmonary System (Lungs)Gastrointestinal SystemMusculoskeletal SystemDermatological System (Skin)Other (Please Specify)
What are the symptoms that you experience as it pertains to your head, neck and overall central nervous system (CNS) (Select ALL that apply)?*

Inflamed glandsPain in the glandsNeuralgia (tingling/numbness sensations)Headaches/migrainesVisual impairmentHearing impairmentSpeech impairmentBrain fog/Memory issuesSeizuresFatigueStiff NeckOther (please specify)
What are the symptoms that you experience as it pertains to your cardiovascular system (Select ALL that apply)?*

ArrhythmiasChest PainBack PainLeft Arm PainFatigueSwelling in the legsOther (please specify)
What are the symptoms that you experience as it pertains to your pulmonary system (lungs) (Select ALL that apply)?*

Shortness of BreathWheezingChronic CoughChest PainBack PainBronchial spasmsChest CongestionOther (please specify)
What are the symptoms that you experience as it pertains to your gastrointestinal system (Select ALL that apply)?*

Weight lossWeight gainDiarrheaConstipationAcid refluxBloatingNausea/VomitingRectal BleedingStomach PainOther (please specify)
What are the symptoms that you experience as it pertains to your musculoskeletal system (Select ALL that apply)?*

Joint PainMobility IssuesFibromyalgia (general widespread pain)InflammationOther (please specify)
What are the symptoms that you experience as it pertains to your dermatological system (skin) (Select ALL that apply)?*

ItchingDermatitis/psoriasisMottled skinEczemaSkin DiscolorationAcneNodularisOther (please specify)
Have you ever felt suicidal because of issues related to your physical health?*

YesNo
Have you ever had thoughts of self-harm because issues related to your physical health?*

YesNo
Have you acted upon these thoughts of self-harm? *

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

Non-prescribed illicit substancesAlcoholCannabis and/or Cannabis-derived productsNot applicableOther (Please Specify)
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 disordersADHD/NeurodivergentOther (please specify)
When you were diagnosed with IgG4-RD, 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 professional?*

YesNo
What was/is your goal in seeking mental health services? *
How well informed was/is your therapist about IgG4-RD? *

1

2

3

4

5

1 is Very Little, 5 is Well informed
How helpful do you feel seeing a mental health specialist has been for your well-being?
Why have you not sought out mental health services? *
How willing are you to receive mental health therapy? *

1

2

3

4

5

1 is Highly Unlikely, 5 is Highly Likely
How satisfied are you with your overall well-being? *
How satisfied are you with your mental health? *

What would you want a mental health therapist to understand about your experience with IgG4-RD? *
Would you be willing to participate in a follow-up compensated interview on this topic?*

YesNo
Name*

First NameLast Name
Email*
example@example.com
Country of Residence*
Phone Number
Please enter a valid phone number.
Please provide your age in years *
What was your biological classification at birth?*

FemaleMalePrefer not to answerIntersex (Please specify)
What is your current gender? *

WomanManTransgender womanTransgender manNon-binary personPrefer not to answerOther (Please specify)
What is your racial classification? Select ALL that apply*

Native AmericanAsianBlackWhiteDon’t know/Not surePrefer not to answerOther (Please 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 (Please 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 degreeOther (Please Specify)
How many loved ones do you care for that have been diagnosed with IgG4-RD?*

1234
Please provide the age of your loved ones in years*
Please select the month and year that your loved one was diagnosed with IgG4-RD from the drop-down. If you do not recall the exact date, please provide the best estimate.
Month*
Year*
Please provide the age of your loved one number 1 in years*
Please provide the age of your loved one number 2 in years*
Please select the month and year that your loved one number 1 was diagnosed with IgG4-RD from the drop-down. If you do not recall the exact date, please provide the best estimate.
Month*
Year*
Please select the month and year that your loved one number 2 was diagnosed with IgG4-RD from the drop-down. If you do not recall the exact date, please provide the best estimate.
Month*
Year*
Please provide the age of your loved one number 1 in years*
Please provide the age of your loved one number 2 in years*
Please provide the age of your loved one number 3 in years*
Please select the month and year that your loved one number 1 was diagnosed with IgG4-RD from the drop-down. If you do not recall the exact date, please provide the best estimate.
Month*
Year*
Please select the month and year that your loved one number 2 was diagnosed with IgG4-RD from the drop-down. If you do not recall the exact date, please provide the best estimate.
Month*
Year*
Please select the month and year that your loved one number 3 was diagnosed with IgG4-RD from the drop-down. If you do not recall the exact date, please provide the best estimate.
Month*
Year*
Please provide the age of your loved one number 1 in years*
Please provide the age of your loved one number 2 in years*
Please provide the age of your loved one number 3 in years*
Please provide the age of your loved one number 4 in years*
Please select the month and year that your loved one number 1 was diagnosed with IgG4-RD from the drop-down. If you do not recall the exact date, please provide the best estimate.
Month*
Year*
Please select the month and year that your loved one number 2 was diagnosed with IgG4-RD from the drop-down. If you do not recall the exact date, please provide the best estimate.
Month*
Year*
Please select the month and year that your loved one number 3 was diagnosed with IgG4-RD from the drop-down. If you do not recall the exact date, please provide the best estimate.
Month*
Year*
Please select the month and year that your loved one number 4 was diagnosed with IgG4-RD from the drop-down. If you do not recall the exact date, please provide the best estimate.
Month*
Year*
What areas of your loved one's body are impacted by IgG4-RD (Select ALL that apply)?*

Central Nervous System (Head, Neck, CNS)Cardiovascular System (Heart)Pulmonary System (Lungs)Gastrointestinal SystemMusculoskeletal SystemDermatological System (Skin)Other (Please Specify)
What are the symptoms that they experience as it pertains to their head, neck and overall central nervous system (CNS) (Select ALL that apply)?*

Inflamed glandsPain in the glandsNeuralgia (tingling/numbness sensations)Headaches/migrainesVisual impairmentHearing impairmentSpeech impairmentBrain fog/Memory issuesSeizuresFatigueStiff NeckOther (please specify)
What are the symptoms that they experience as it pertains to their cardiovascular system (Select ALL that apply)?*

ArrhythmiasChest PainBack PainLeft Arm PainFatigueSwelling in the legsOther (please specify)
What are the symptoms that they experience as it pertains to their pulmonary system (lungs) (Select ALL that apply)?*

Shortness of BreathWheezingChronic CoughChest PainBack PainBronchial spasmsChest CongestionOther (please specify)
What are the symptoms that they experience as it pertains to their gastrointestinal system (Select ALL that apply)?*

Weight lossWeight gainDiarrheaConstipationAcid refluxBloatingNausea/VomitingRectal BleedingStomach PainOther (please specify)
What are the symptoms that they experience as it pertains to their musculoskeletal system (Select ALL that apply)?*

Joint PainMobility IssuesFibromyalgia (general widespread pain)InflammationOther (please specify)
What are the symptoms that they experience as it pertains to their dermatological system (skin) (Select ALL that apply)?*

ItchingDermatitis/psoriasisMottled skinEczemaSkin DiscolorationAcneNodularisOther (please specify)
What is your relationship to your loved one diagnosed with IgG4-RD?*

Parent/GuardianSiblingPartner/SpouseOther (Please Specify)
What are all the things you need to do for your loved one(s) who has IgG4-RD?*
Have you ever experienced caregiver burnout while giving care to your loved one(s) living with IgG4-RD? *

YesNo
Have you ever felt suicidal because of your loved one(s) physical health?*

YesNo
Have you ever had thoughts of self-harm because of your loved one(s) physical health?*

YesNo
Have you acted upon these thoughts of self-harm? *

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

Non-prescribed illicit substancesAlcoholCannabis and/or Cannabis-derived productsNot applicableOther (Please Specify)
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 disordersADHD/NeurodivergentOther (please specify)
When your loved one(s) were diagnosed with IgG4-RD, was a mental health provider recommended to your family as a part of the care team?*

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

YesNo
What was/is your goal in seeking mental health services? *
How well informed was/is your therapist about IgG4-RD? *

1

2

3

4

5

1 is Very Little, 5 is Well informed
How helpful you feel seeing a mental health professional has been or was as a caregiver of a person living with IgG4-RD?*
Why have you not sought out mental health services? *
How willing are you to receive mental health therapy? *

1

2

3

4

5

1 is Highly Unlikely, 5 is Highly Likely
How satisfied are you with your loved one(s) overall well-being? *
How satisfied are you with your own mental health? *

What would you want a mental health therapist to understand about your experience as a caregiver to a person living with IgG4-RD? *
Would you be willing to participate in a follow-up compensated interview on this topic?*

YesNo
Name*

First NameLast Name
Email*
example@example.com
Country of Residency*
Phone Number
Please enter a valid phone number.
Phone Number
Please enter a valid phone number.

	Have Tried	Would Like to try	Not interested
In person 1:1 therapy
Virtual 1:1 therapy
Hybrid (virtual/in-person) 1:1 therapy
Online group therapy
In-person group therapy
Mental Health App
Peer support
Faith-based support
Social media support groups (i.e. Facebook, Discord, etc.)

	Have tried	Would like to try	Not interested
In person 1:1 therapy
Virtual 1:1 therapy
Hybrid (virtual/in-person) 1:1 therapy
Online group therapy
In-person group therapy
Mental Health App
Peer support
Faith-based support
Social media support groups (i.e. Facebook, Discord, etc.)