Mailchimp Survey

Survey for Women Living with Multiple Sclerosis (MS)
We invite you to participate in a survey designed to gather insights from women living with Multiple Sclerosis (MS). Your feedback will help us understand the needs and challenges faced by the MS community, with the aim of improving resources and support available to you.
The survey will cover various aspects of your MS journey, including your experiences, challenges, and thoughts on potential support mechanisms. It should take approximately 10-15 minutes to complete. Your responses will be confidential and will only be used for the purpose of enhancing support for MS patients.
By sharing your valuable input, you will contribute to efforts aimed at making a positive impact on the MS community. Additionally, you may have the opportunity to participate in a pilot version of new support initiatives and provide further feedback.
Thank you for your time and participation.
Take care, be well
Alana Mbanza
Demographic Information
Gender Identity
*
WomanManNon-binary/non-conformingTransgenderPrefer not to say
Age
*
Under 1818-2425-3435-4455-6465-7677+Prefer not to say
Country of Residence
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United StatesCanadaUnited KingdomAustraliaOther
Ethnicity/Race
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Black or African American
White
Hispanic or Latino
Asian
Native American or Indigenous
Mixed or Biracial
Prefer not to say
Other
Highest Level of Education Completed
*
Less than high school diploma High school diploma or equivalent Some college, no degree Associate degree (e.g., AA, AS) Bachelor’s degree (e.g., BA, BS) Master’s degree (e.g., MA, MS) Doctoral degree (e.g., PhD, MD, JD) Professional degree (e.g., MD, DDS, DVM)Prefer not to say
Employment Status
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Employed full-time
Employed part-time
Self-employed
Unemployed
Retired
Student
Unable to work due to disability
Prefer not to say
Other
Household Income
Under $25,000$25,000-$49,999$50,000-$74,999$75,000-$99,999$100,000-$149,999$150,000 or morePrefer not to say
Diagnosis Timeline
How long have you been experiencing Multiple Sclerosis (MS) symptoms?
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Less than 6 months6-12 months1-2 years2-3 years3-5 years5-7 years8-10 years11-13 years13-15 years15+Other
When were you diagnosed with MS?
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Less than 1 year ago1-2 years ago3-5 years ago6-8 years ago9-11 years ago12 + years ago
Who officially diagnosed you with MS?
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Neurologist
Primary care physician
MS specialist
Eye specialist
Emergency Room (ER) physician
Unsure
I haven't been officially diagnosed yet
Other
Please indicate what type of multiple sclerosis you have been diagnosed with.
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Relapsing Remitting Multiple Sclerosis (RRMS)
Secondary Progressive Multiple Sclerosis (SPMS)
Primary Progressive Multiple Sclerosis (PPMS)
I'm not sure.
How old were you when you were diagnosed with MS?
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Hay anyone in your immediate family been diagnosed MS? (Ex: parents, siblings, or children)
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YesNo
If you answered yes, please indicate who in your immediate family has been diagnosed with MS? (Ex: grandparents, aunts, uncles, cousins, nieces, nephews)
Hay anyone in your extended family been diagnosed MS? (Ex: grandparents, aunts, uncles, cousins, nieces, nephews)
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YesNo
If you answered yes, please indicate who in your extended family has been diagnosed with MS? (Ex: grandparents, aunts, uncles, cousins, nieces, nephews)
MS Information and Resources
Where did you get information about MS after you were diagnosed? (Select all that apply)
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Healthcare provider
Online resources (websites, research reports)
Books or printed materials
MS support groups or forums
Family or friends
Other
How knowledgeable did you feel about Multiple Sclerosis (MS) 1 year after your diagnosis?
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Very knowledgeableSomewhat knowledgeableNeutralNot very knowledgeableNot knowledgeable at allNot applicable
How prepared did you feel to manage your Multiple Sclerosis (MS) 1 year after your diagnosis?
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Very preparedSomewhat preparedNeutralNot very preparedNot prepared at allNot applicable
What type of support would have been most helpful in the first year following your diagnosis? (Select all that apply)
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Emotional support (counseling/therapy)
Educational materials about MS
Practical advice for managing daily life
Access to MS specialists
Information about alternative or holistic therapies
Financial assistance
Support groups (in-person or online)
Mentorship
Other
MS Treatment and Management
Who currently treats you and helps you manage your MS?
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Neurologist
Primary care physician
MS specialist
Eye specialist
Other
How do you currently treat or manage your MS symptoms? Check all that apply.
*
Medication
Regular check-ups with healthcare providers
Physical Therapy
Exercise Routines
Dietary Changes
Mental Health Support (therapy or counseling)
Assistive Devices (mobility aids, adaptive tools)
Home modifications for accessibility
Mindfulness and meditation practices
Alternative therapies (acupuncture, massage, etc.)
Using health management apps or technology tools
Other
What factors influence your decision when choosing your treatment and management plan? Select all that apply
*
Doctor's recommendation
Research and information
Personal preferences
Advice from other MS patients
No
Other
How do you stay organized and ensure you're following your treatment plan effectively? Select all that apply
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Setting reminders (e.g., alarms, calendar alerts)
Using medication organizers or pill boxes
Keeping a treatment journal or log
Using health management apps or digital tools
Following a routine or schedule
Family members or caregivers help remind me
Regular check-ins with healthcare provider
I don't stay organized or actively manage my treatment plan
Other
Do you consider your relationship with your healthcare provider to be helpful, useful, and supportive?
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Very helpful and supportiveSomewhat helpful and supportiveNeutral Not very helpful or supportiveNot helpful or supportive at allOther
What type of feedback or information from your healthcare provider has been most useful? (Select all that apply)
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Information on treatment options
Guidance on symptom management
Emotional support and encouragement
Referrals to specialists or additional resources
Follow-up and check-ins
Other
Are there areas where you feel your healthcare provider could improve in supporting you?
What are the most challenging aspects of living with MS? Select all that apply
*
Physical: Experiencing fatigue, mobility issues, and pain that interfere with daily activities and overall independence.
Emotional or psychological: Dealing with mood swings, depression, or anxiety stemming from the unpredictable nature of MS.
Intellectual: Facing cognitive impairments such as memory loss or difficulty concentrating, which can affect work and personal life.
Social/Relational: Struggling to maintain relationships and social activities due to physical limitations and emotional strain.
Career/Vocational/Occupational: Encountering challenges in maintaining employment or advancing in a career due to fluctuating symptoms and disability.
Spiritual: Wrestling with feelings of hopelessness or searching for meaning and purpose in the face of a chronic illness.
Financial: Managing the high costs of medical treatments, therapies, and potential loss of income due to disability.
Environmental: Adapting to physical environments that are not accommodating to mobility aids or other needs related to MS.
Other
Have you ever participated in any patient incentive or reward programs?
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YesNo
If you have participated in a patient incentive or reward programs, what did you like or dislike about it? (A patient reward or incentive program gives patients rewards or benefits to encourage them to follow their treatment plans or achieve health goals)
How interested would you be in joining an MS patient incentive or reward program?
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Very interestedSomewhat interestedNeutralSomewhat uninterestedVery uninterested
Would you be more likely to join this program if it was recommended by your healthcare provider or health insurance company?
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YesNoMaybe
What barriers might prevent you from participating in this program? (Select all that apply)
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Time constaints
Lack of interest or motivation
Concerns about program effectiveness
Mistrust of the medical system
Other
What types of incentives or rewards would motivate you to adhere to your treatment plan? (Select all that apply)
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Gift Cards
Discounts on medication or healthcare services
Fitness or wellness-related rewards
Educational resources or tools
Other
What features would you find most useful in an app to manage an MS incentive or rewards program?
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How frequently would you prefer to receive updates or rewards from an app to manage an MS incentive or rewards program? Select all that apply
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Daily
Weekly
Monthly
Upon reaching specific milestones
Other
How comfortable are you with sharing your health information with a third-party incentive program?
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Very comfortableSomewhat comfortableNeutralSomewhat uncomfortableVery uncomfortable
Do you have any other suggestions or ideas that could make this incentive program more appealing or useful for you and others with MS?
Would you be willing to participate in a pilot version of this program and provide feedback?
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YesNo
Sign up for the MS patient incentive pilot program by entering your contact information below.
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