We thank you for your interest in our survey which is now closed for participation. Stay tuned for future updates!
In the meantime, as your loved one with rare epilepsy ages into adulthood, we encourage you to reach out to your rare epilepsy organization for support as they are your best resource.
Thanks so much and have a great day!
Next
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CLICK HERE TO GO TO SURVEY
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Language
This survey is available in English and Spanish. Please make your selection below.
Click here to access this survey in Spanish
Click here to access this survey in English
Esta encuesta está disponible en inglés y español. Seleccione a continuación.
Haga clic aquí para acceder a esta encuesta en español
Haga clic aquí para acceder a esta encuesta en inglés
Next
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Hello Rare Epilepsy Families!
We are kicking off a project to create easily accessible resources for families living in the U.S. to address the unmet needs in the following—
Support of Adult Rare Epilepsy Siblings (those who have a brother or sister with a rare epilepsy)
Adult Sibling Involvement in Long-Term Adult Care Planning for their loved one with rare epilepsy
Support of Parents & Caregivers for Long-Term Adult Care Planning for loved ones with rare epilepsy
And we need your input!
The purpose for this important research survey is to focus on challenges families like yours face every day as your loved one with rare epilepsy ages into adulthood. The data collected will help inform the project team to obtain a better understanding of the type of resources that could be created to address some of the most pressing concerns. While this project won’t be able to tackle every issue, it is the goal of the project team to identify what can be addressed and to create resource materials to help support your family as you navigate this complex process.
GO TO CONSENT FORM
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Informed Consent
TITLE: A survey of rare epilepsy parents and adult siblings of patients with rare epilepsies to assess the resources needed to help prepare families living in the U.S. for long term adult care planning for their rare epilepsy loved one.
PROTOCOL NO.: ZXIIS2022-003 – English Version
SPONSOR: Zogenix, now a part of UCB
INVESTIGATOR:
Laurie D. Bailey
5959 Horton St.
Suite 500
Emeryville, California 94608
United States
STUDY-RELATED
PHONE NUMBER(S): Laurie Bailey
1-866-ZOGENIX (press 1, then press 1 again)
610-793-1697 Home office phone (24 hours)
610-368-4867 Cell phone (24 hours)
You are being asked to be in a research study that will help us learn more about what type of resources are needed to support your loved one with rare epilepsy as they age into adulthood.
Your participation will involve completing an online survey and will take about 15-20 minutes to complete.
There are no known risks associated with being in this research.
You may not receive a direct benefit if you agree to participate. However, people in the future may benefit from the information obtained from this research.
Your alternative is to not participate in this study.
Contact Laurie Bailey on the medical information line at 1-866-ZOGENIX (press 1, then press 1 again) or 610-793-1697 Home office phone (24 hours) or 610-368-4867 Cell phone (24 hours) for questions, concerns or complaints about the research or if you think you have been harmed as a result of joining this research.
Contact the WCG IRB if you have questions about your rights as a research subject, or questions, concerns, complaints or input about the research: WCG IRB, 1019 39th Ave., SE, Suite 120, Puyallup, WA 98374, Telephone: 1-855-818-2289, E-mail: clientservices@wcgirb.com.
WCG IRB is a group of people who perform independent review of research.
WCG IRB will not be able to answer some study-specific questions. However, you may contact WCG IRB if the research staff cannot be reached or if you wish to talk to someone other than the research staff.
No personally identifiable data will be collected in this research study. The study staff will share the records generated from this research with the sponsor, regulatory agencies such as the Department of Health and Human Services (DHHS) and the IRB. This information is shared so the research can be conducted and properly monitored.
Your decision to be in this study is voluntary. You will not be penalized or lose benefits if you decide not to participate or if you decide to stop participating.
ACCEPT CONSENT AND PROCEED TO SURVEY
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During the first phase of this project, working with rare epilepsy families, we identified three different resources that would provide the most meaningful impact.
Long-Term Adult Care Planning
Care Binder for Loved One with Rare Epilepsy
Adult Sibling Binder that acts as a guide for the long-term care planning for their sibling with a Rare Epilepsy
You will be asked a series of questions that will directly impact the design of these proposed resources.
The survey will take approximately 15-20 minutes. You must finish the survey in one sitting—you may not save and return to complete at a later time.
Why are we conducting this research?
Long-term care planning is the process of planning for the future of your loved one with rare epilepsy as they age. Transitioning into adulthood and moving all of your loved one's medical, psychosocial, educational/vocational, and other care needs to practitioners who manage adult patients is a complex process that is required when they “age out” of the system. There are many different age cutoffs and requirements can vary from state to state, hospital to hospital, service provider to service provider as well as with insurance companies. It’s hard to know how and when to begin planning for your loved one with rare epilepsy.
We want to provide resources that support this difficult transition period for both parents & adult siblings.
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I care for or have a loved one with a Rare Epilepsy diagnosis.
YES
NO
Specify Rare Epilepsy Diagnosis:
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Demographic information about YOU
All questions on this page are asking questions about
you
.
Please answer to the best of your ability.
Please select all that apply:
I am the...
Parent
Guardian
Non-Parent/Non-Sibling Caregiver
Adult Sibling
Other
...of a loved one with rare epilepsy.
Please provide the nature of your relationship to the loved one with rare epilepsy.
Do you still live at home with your parents and/or other family members?
YES
NO
YES, but only part time
My role is...
Primary Caregiver
Part-time Caregiver
None of the above
What is your age?
18
19
20
21
22
23
24
25
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81
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84
85
90
What is your gender?
Male
Female
Other
What is your ethnicity?
American Indian or Alaska Native
Asian
Black or African American
Native Hawaiian or Other Pacific Islander
White (Non-Hispanic)
White (Hispanic)
State of Residence:
Alabama
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
Delaware
District of Columbia
Florida
Georgia
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
West Virginia
Wisconsin
Wyoming
What is your total household income?
Below $10k
$10k-$50k
$50k-$100k
$100k-$150k
$150k+
Your Highest Educational Status:
Less than a high school diploma
High school diploma or equivalent
Bachelor’s degree (e.g. BA, BS)
Master’s degree (e.g. MA, MS, MEd)
Doctorate (PhD, EdD)
Other
Please specify:
What language is spoken in your home?
Primary:
English
Spanish
Chinese
Japanese
German
French
Tagalog
Vietnamese
Other
Please specify:
Secondary:
English
Spanish
Chinese
Japanese
German
French
Tagalog
Vietnamese
Other
Please specify:
Total number of family members living in your household:
Please let us know the number of brothers and/or sisters your loved one with rare epilepsy has (including you, if you are an adult sibling):
Please provide the following information for each sibling:
Information for
Sibling #1
Age:
1
2
3
4
5
6
7
8
9
10
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80
81
82
83
84
85
90
Gender:
Male
Female
Other
Lives in my family’s household with parents and/or other family members:
YES
NO
Information for
Sibling #2
Age:
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
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81
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83
84
85
90
Gender:
Male
Female
Other
Lives in my family’s household with parents and/or other family members:
YES
NO
Information for
Sibling #3
Age:
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
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80
81
82
83
84
85
90
Gender:
Male
Female
Other
Lives in my family’s household with parents and/or other family members:
YES
NO
Information for
Sibling #4
Age:
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
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81
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84
85
90
Gender:
Male
Female
Other
Lives in my family’s household with parents and/or other family members:
YES
NO
Information for
Sibling #5
Age:
1
2
3
4
5
6
7
8
9
10
11
12
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84
85
90
Gender:
Male
Female
Other
Lives in my family’s household with parents and/or other family members:
YES
NO
Information for
Sibling #6
Age:
1
2
3
4
5
6
7
8
9
10
11
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85
90
Gender:
Male
Female
Other
Lives in my family’s household with parents and/or other family members:
YES
NO
Information for
Sibling #7
Age:
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
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17
18
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85
90
Gender:
Male
Female
Other
Lives in my family’s household with parents and/or other family members:
YES
NO
Information for
Sibling #8
Age:
1
2
3
4
5
6
7
8
9
10
11
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85
90
Gender:
Male
Female
Other
Lives in my family’s household with parents and/or other family members:
YES
NO
Do you have children?
Yes
No
How many children do you have?
Please provide the following information for each of your children:
Information for
Child #1
Age:
1
2
3
4
5
6
7
8
9
10
11
12
13
14
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17
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78
79
80
81
82
83
84
85
90
Gender:
Male
Female
Other
Lives in my household:
YES
NO
Information for
Child #2
Age:
1
2
3
4
5
6
7
8
9
10
11
12
13
14
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81
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83
84
85
90
Gender:
Male
Female
Other
Lives in my household:
YES
NO
Information for
Child #3
Age:
1
2
3
4
5
6
7
8
9
10
11
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Gender:
Male
Female
Other
Lives in my household:
YES
NO
Information for
Child #4
Age:
1
2
3
4
5
6
7
8
9
10
11
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Gender:
Male
Female
Other
Lives in my household:
YES
NO
Information for
Child #5
Age:
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
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Gender:
Male
Female
Other
Lives in my household:
YES
NO
NEXT
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Please tell us about your Loved One with Rare Epilepsy.
If you are not the primary caregiver of your loved one with rare epilepsy,
please answer to the best of your ability.
Age of your loved one with rare epilepsy:
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
26
27
28
29
30
31
32
33
34
35
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66
67
68
69
70
71
72
73
74
75
76
77
78
79
80
81
82
83
84
85
90
State of Residence where your loved one with rare epilepsy lives:
Alabama
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
Delaware
District of Columbia
Florida
Georgia
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
West Virginia
Wisconsin
Wyoming
Please identify the living arrangement of your loved one diagnosed with rare epilepsy:
At home with parents or primary caregiver
Group home
Institutional setting, such as a nursing home or intermediate care facility
Unsure
Other
Please specify:
Insurance coverage for your loved one diagnosed with rare epilepsy (check all that apply):
Private
CHIP
Medicaid
Medicare Waivers (for loved ones <18 years old)
Social Security Disability Insurance Benefits (applies to rare epilepsy loved ones 18 years of age and older)
Uninsured
Unsure
Other
Please specify:
Next
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In this next section, please tell us about the
basic abilities of your loved one with rare epilepsy
Feeding (ability to eat):
Is assistance required?
Never
Sometimes
Usually
Always
Unsure
Does your loved one with rare epilepsy require feeding and drinking via a G-tube?
Yes
No
Unsure
Please indicate frequency:
Sometimes
Ususally
Always
Unsure
Toileting:
Is assistance required?
Never
Sometimes
Usually
Always
Unsure
Does your loved one with rare epilepsy require the use of diapers or similar incontinence support?
Yes
No
Unsure
Please indicate frequency:
Sometimes
Ususally
Always
Unsure
Required only for sleep:
YES
NO
Bathing and Personal Hygiene:
Is assistance required?
Never
Sometimes
Usually
Always
Unsure
Dressing:
Is assistance required?
Never
Sometimes
Usually
Always
Unsure
Safety Monitoring:
Is safety monitoring required?
Never
Sometimes
Usually
Always
Unsure
Walking:
Is assistance required walking
short
distances?
Never
Sometimes
Usually
Always
Unsure
Is assistance required walking
long
distances?
Never
Sometimes
Usually
Always
Unsure
Does your loved one with rare epilepsy use any of the following? Select all that apply.
Adaptive Stroller:
Never
Sometimes
Usually
Always
Unsure
Walker:
Never
Sometimes
Usually
Always
Unsure
Wheelchair:
Never
Sometimes
Usually
Always
Unsure
Communication:
How does your loved one with rare epilepsy communicate? Check all that apply.
Speaks
Facial Expressions
Gestures
Pointing/Using Hands
Writing
Drawing
Using Equipment e.g. Text Message or Computer/iPad
AAC (Augmentative and Alternative Communication) device
Touch
Sound(s)
Eye Contact
Unsure
Please specify:
Single words
3-5 Words only
Short sentences
Fluently
Next
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What other durable medical equipment do you have to support your loved one with rare epilepsy (e.g. oxygen, sleep monitor, etc.)?
Please list (up to 5) additional daily activities and/or care routines that are relevant to your loved one with rare epilepsy and the level of assistance required with each. For example, regular walks, groups activities with occupational therapist, etc.
Activity 1:
Is assistance required?
Never
Sometimes
Usually
Always
Unsure
Would you like to add another activity?
YES
NO
Activity 2:
Is assistance required?
Never
Sometimes
Usually
Always
Unsure
Would you like to add another activity?
YES
NO
Activity 3:
Is assistance required?
Never
Sometimes
Usually
Always
Unsure
Would you like to add another activity?
YES
NO
Activity 4:
Is assistance required?
Never
Sometimes
Usually
Always
Unsure
Would you like to add another activity?
YES
NO
Activity 5:
Is assistance required?
Never
Sometimes
Usually
Always
Unsure
Next
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Please identify your loved one with rare epilepsy's co-morbidities
and indicate how each impacts daily life. Check all that apply.
Skin Abnormalities
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
Intellectual Disability
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
Autism Spectrum Disorder
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
Seizures
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
Behavioral Problems
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
Developmental Delays
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
Movement and Balance Issues
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
Orthopedic Conditions
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
Delayed Language and Speech Issues
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
Growth and Nutrition Issues
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
Sleeping Difficulties
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
Chronic Infections
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
Sensory Integration Disorders
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
Digestive Issues
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
Dysautonomia, or disruptions of the autonomic nervous system which can lead to difficulty regulating body temperature, heart rate, blood pressure, and other issues
How much does this impact daily life?
Significant Impact
Some Impact
Minimal Impact
No Impact
Unsure
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In this section, please identify specialists your loved one with epilepsy sees now
or has seen throughout their journey and indicate the frequency of interaction.
If you are not the primary caregiver of your loved one with rare epilepsy,
please answer to the best of your ability. Check all that apply.
Pediatrician:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Family Practitioner:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Adult Primary Care Provider:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Neurologist:
Bi-weekly
Weekly
Monthly
Quarterly
Annually
Bi-Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Epileptologist:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Pediatric Nurse:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Nurse Practitioner:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Neuropsychologist:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Clinical Psychologist or Psychiatrist:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Speech Therapist:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Occupational Therapist:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Physical Therapist:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Pulmonary Specialist:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Cardiologist:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Endocrinologist:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Geneticist:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Gastroenterology (GI) Specialist:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Physical Medicine:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Rehabilitation Specialist:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Nutritionist:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Gynecologist:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Palliative Care:
Bi-weekly
Weekly
Monthly
Quarterly
Bi-Annually
Annually
See currently
Probably still needs this provider’s service but has lost access to them
No longer require this provider’s services
Unsure
N/A
Other:
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Access to Resources
How do you currently identify/obtain support resources? Check all that apply.
Disease specific patient organizations (e.g. Dravet Syndrome or Lennox-Gastaut Foundations)
General patient organizations (e.g. Epilepsy Foundation)
Other parents/caregivers
Primary care physician
Support staff at physician’s office
Nurses
Hospital resources
Social media
Scientific publication
General internet search
General community—word of mouth
Disease specific community—word of mouth
State-based organizations/resources
School
In-home support staff
Regional Organizations-local disability support group
Regional Organizations-family support groups (e.g. Family Voices, ARC)
Regional Organizations-transition support groups
Regional Organizations-adult day programs
Other:
How do you access information? Check all that apply.
Internet – home computer with Wi-Fi access
Internet – public or other access
TV
Radio
Newspaper/Magazine
Doctor's office
Pharmacy
Computer with Wi-Fi access—library or other
Cell phone
Tablet
Word of mouth
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Long term adult care planning
Do your current long-term care plans include support or a transfer of primary care to one of the siblings of your loved one with rare epilepsy or for one of the siblings to serve in some capacity as guardian or other?
Yes
No
Unsure
N/A
Does the long-term care plan include a transfer of primary care for your brother or sister with rare epilepsy to you, or for you to serve in some capacity as guardian or other?
Yes
No
Unsure
N/A
What long-term adult care planning tasks have you attempted or successfully accomplished?
The long-term adult care planning tasks relate to the process of planning for care as your loved one with rare epilepsy transitions from a pediatric care team to an adult care team. The process generally takes many years to complete. Some of our loved ones end up remaining with their pediatric care providers throughout their life and some transition to adult care providers. Some of our loved ones with rare epilepsy may have a mix of pediatric and adult providers on their care team. Please indicate the status of each.
Have you been involved in the long-term adult care planning for your brother or sister diagnosed with rare epilepsy? Has the primary caregiver attempted or successfully accomplished the long-term adult care planning tasks for your loved one with rare epilepsy?
The long-term adult care planning tasks relate to the process of planning for care as your loved one with rare epilepsy transitions from a pediatric care team to an adult care team. The process generally takes many years to complete. Some of our loved ones end up remaining with their pediatric care providers throughout their life and some transition to adult care providers. Some of our loved ones with rare epilepsy may have a mix of pediatric and adult providers on their care team. Please answer to the best of your ability for each of the tasks listed below. It's okay if you are unsure about the status of your loved one’s long-term care plan.
Medical
Pediatric to Adult Care Team:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Financial
Access to State Waivers to continue
Medicaid
coverage:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Access to State Waivers to apply for/continue
Medicare
coverage:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
State disability programs:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Social Security Insurance (SSI) benefits:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Legal
Conservatorship/guardianship/power of attorney information:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Special needs trust informaton:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Living Arrangements
Adult care:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
In-home nursing care:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Supported living and assisted living facilities:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Day Programs
Day programs information:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Adult recreation programs:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Other
Respite care:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Durable Medical Equipment providers & how DMEs are funded:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Incontinence & medical supplies:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Supported employment (for the few who may qualify):
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Available transportation to programs/employment:
Not started
In progress
Started but unable to complete
Completed
Unsure
N/A
Level of Involvement:
Involved
Not involved
Availability of Information
Do you currently feel you have access to the long-term adult care
planning information
you need?
Yes
No
Unsure
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Method of Communication
What is the best way to communicate information and support you on how to use resources available to you? Please rate the items below based on your preference.
Email:
1
2
3
4
5
Direct mail:
1
2
3
4
5
Newsletter:
1
2
3
4
5
Social media post:
1
2
3
4
5
Website:
1
2
3
4
5
Who do you prefer to provide you with this information? Check all that apply.
Rare epilepsy patient organization
Healthcare Professional
Another caregiver from your rare epilepsy community
Family member or friend
Other
Please specify:
Training on how to use resources
What is the best way to communicate information in order to support you on how to use resources available to you? Please rate the items below based on your preference.
Written instruction:
1
2
3
4
5
Live virtual workshops:
1
2
3
4
5
In person workshops (at regional or national patient community events):
1
2
3
4
5
On-Demand, Online video tutorials:
1
2
3
4
5
What other critical information will be necessary to obtain to help us build out these resources in order to support you?
You've come to the end of survey. Thank you so much for your time today.
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