dataMSA was launched in March 2014. The purpose the Annual Update Survey was to collect data and information for the prior 12 months from individuals who previously participated in the dataMSA Survey for Multiple System Atrophy for the purposes of longitudinal study.
Background Information
Who is completing this survey?
Person living with MSA
27
54%
Caregiver/loved one of an individual currently living with MSA
10
20%
Caregiver/loved one of an individual lost to MSA
13
26%
What is/was the individual’s gender?
male
30
62.5%
female
18
37.5%
With which type of MSA was the individual diagnosed?
MSA-c
26
52%
MSA-p
12
24%
uncertain
12
24%
In which country/region does/did the individual reside?
Region I: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont
3
6.4%
Region II: New Jersey, New York, Puerto Rico, Virgin Islands
0
0%
Region III: Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, West Virginia
2
4.3%
Region IV: Alabama, Florida, Georgia, Kentucky, Mississippi
3
6.4%
Region V: Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin
9
19.1%
Region VI: Arkansas, Louisiana, New Mexico, Oklahoma, Texas
4
8.5%
Region VII: Iowa, Kansas, Missouri, Nebraska
3
6.4%
Region VIII: Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming
0
0%
Region IX: Arizona, California, Hawaii, (Pacific Islands)
3
6.4%
Region X: Alaska, Idaho, Oregon, Washington
5
10.6%
Region XI: Canada
1
2.1%
Region XII: Central America
1
2.1%
Region XIII: Asia
2
4.3%
Region XIV: Africa
1
2.1%
Region XV: South America
0
0%
Region XVI: Antarctica
0
0%
Region XVII: Europe
1
2.1%
Region XVIII: Australia (continent)
9
19.1%
Observations
In the past 12 months, how would you describe the rate of progression of the individual’s MSA symptoms/illness?
no noticeable sign of progression in the past 12 months
0
0%
some subtle signs of progression in the past 12 months
6
14%
definite signs of progression in the past 12 months
24
55.8%
signs of rapid progression in the past 12 months
13
30.2%
Please indicate all symptom(s) which the individual experiences(ed) that noticeably worsened in the past 12 months:
Neuropathy (numbness, tingling in extremities)
14
31.8%
Excessive Neuro-Response (jumpy reflexes)
14
31.8%
Difficulty Walking
35
79.5%
Impaired Balance
32
72.7%
Fainting
8
18.2%
Falling
15
34.1%
Unstable Blood Pressure
20
45.5%
Dystonia (muscle spasms/ rigidity)
18
40.9%
Neuro-Motor Freeze (temporarily unable move at all)
10
22.7%
Myalgia (muscle pain)
10
22.7%
Tremors in Extremities
17
38.6%
Impaired Fine Motor Skills
27
61.4%
Head Droops Down or To One Side
17
38.6%
Dry Eyes
9
20.5%
Teary Eyes
15
34.1%
Impaired Vision
12
27.3%
Eye Fatigue
7
15.9%
Optic Nerve Damage
0
0%
Difficulty Swallowing/Choking
23
52.3%
Excessive Coughing
5
11.4%
Dry Mouth
11
25%
Overly Moist Mouth
9
20.5%
Difficulty Breathing
14
31.8%
Impaired Speech
30
68.2%
Digestive Disorder (diarrhea, constipation)
26
59.1%
Excessive Gas/Bloating
5
11.4%
Irregularity
5
11.4%
Impaired Bowel Control
12
27.3%
Impaired Bladder Control
25
56.8%
Impotence
12
27.3%
Chronic Fatigue
15
34.1%
Insomnia
3
6.8%
Impaired REM Sleep Cycle
9
20.5%
Confused Thought/Cognition
12
27.3%
Impaired Memory – Short, Intermediate, Long Term
11
25%
Inappropriate Emotions (crying, anger, etc.)
15
34.1%
Excessive Reaction to Minor Stressors
16
36.4%
Chronic Headaches
6
13.6%
Depression
11
25%
Anxiety
6
13.6%
Attempt(s) at Suicide
0
0%
Chills/Sweating/Overheating
15
34.1%
Rashes, Dry Skin, Itchiness
8
18.2%
Puffiness Under the Skin
1
2.3%
Other
2
4.5%
Please indicate all NEW symptom(s) which the individual experienced in the past 12 months:
Neuropathy (numbness, tingling in extremities)
3
9.7%
Excessive Neuro-Response (jumpy reflexes)
1
3.2%
Difficulty Walking
3
9.7%
Impaired Balance
1
3.2%
Fainting
1
3.2%
Falling
4
12.9%
Unstable Blood Pressure
1
3.2%
Dystonia (muscle spasms/ rigidity)
3
9.7%
Neuro-Motor Freeze (temporarily unable move at all)
0
0%
Myalgia (muscle pain)
1
3.2%
Tremors in Extremities
1
3.2%
Impaired Fine Motor Skills
2
6.5%
Head Droops Down or To One Side
4
12.9%
Dry Eyes
3
9.7%
Teary Eyes
5
16.1%
Impaired Vision
8
25.8%
Eye Fatigue
5
16.1%
Optic Nerve Damage
0
0%
Difficulty Swallowing/Choking
7
22.6%
Excessive Coughing
4
12.9%
Dry Mouth
3
9.7%
Overly Moist Mouth
1
3.2%
Difficulty Breathing
5
16.1%
Impaired Speech
5
16.1%
Digestive Disorder (diarrhea, constipation)
2
6.5%
Excessive Gas/Bloating
2
6.5%
Irregularity
0
0%
Impaired Bowel Control
4
12.9%
Impaired Bladder Control
5
16.1%
Impotence
2
6.5%
Chronic Fatigue
1
3.2%
Insomnia
1
3.2%
Impaired REM Sleep Cycle
0
0%
Confused Thought/Cognition
5
16.1%
Impaired Memory – Short, Intermediate, Long Term
7
22.6%
Inappropriate Emotions (crying, anger, etc.)
3
9.7%
Excessive Reaction to Minor Stressors
4
12.9%
Chronic Headaches
0
0%
Depression
3
9.7%
Anxiety
1
3.2%
Attempt(s) at Suicide
0
0%
Chills/Sweating/Overheating
4
12.9%
Rashes, Dry Skin, Itchiness
1
3.2%
Puffiness Under the Skin
1
3.2%
Other
3
9.7%
Please indicate any of the following events that were noted to cause the individual’s MSA symptoms to worsen in the past 12 months?
None
10
25%
Exposure to heat
19
47.5%
Stress
15
37.5%
Fatigue/exertion
16
40%
Lack of sleep
6
15%
Diet/Reactions to certain foods
3
7.5%
Medication
1
2.5%
Loud noise
7
17.5%
Bright or pulsing/flashing light
6
15%
Confusion
6
15%
Depression
2
5%
Other
3
7.5%
If worsening of the individual’s symptoms were observed in cycles, on average, what was the frequency of the cycles in the past 12 months?
approximately twice a week
6
28.6%
approximately once a week
5
23.8%
approximately twice a month
3
14.3%
approximately once a month
4
19%
less frequently than once a month
3
14.3%
If worsening of the individual’s symptoms were observed in cycles, on average, what was the duration of the cycles in the past 12 months?
less than 6 hours
1
5%
6-12 hours
4
20%
13-18 hours
0
0%
19-24 hours
0
0%
one to two days
9
45%
more than two full days
6
30%
Has the frequency of the cycles increased in the past 12 months?
yes
16
72.7%
no
6
27.3%
Has the duration of the cycles increased in the past 12 months?
yes
16
69.6%
no
7
30.4%
Please indicate any strategies/interventions that were noted to reduce the individual’s symptoms in the past 12 months.
None
5
13.9%
Diet
4
11.1%
Exercise/Physical Activity
13
36.1%
Physical Therapy/ Movement Therapy
16
44.4%
Acupuncture
2
5.6%
Light Therapy
0
0%
Speech Therapy
10
27.8%
Supplements (please describe below)
5
13.9%
Socialization
7
19.4%
Games, Puzzles, etc.
5
13.9%
Other
6
16.7%
Patient Care
In the past 12 months, how often did the individual receive neurological care?
once
5
11.9%
twice
10
23.8%
three or more times
15
35.7%
no neurological care in the past year
12
28.6%
What was the nature of the neurological care the individual received during these visits?
neurological consultation
20
64.5%
neurological assessment
17
54.8%
MRI
8
25.8%
CAT scan
3
9.7%
Other
2
6.5%
Has the patient been prescribed/administered any NEW medications within the past 12 months for treatment of MSA symptoms?
no
26
60.5%
yes
17
39.5%
If the patient was prescribed/administered NEW medications within the past 12 months for the treatment of MSA symptoms, were the medications found to be effective?
no
13
54.2%
yes
11
45.8%
In the past 12 months, has the individual participated in clinical research regarding MSA?
no
38
88.4%
yes
5
11.6%
If, in the past 12 months, the individual did not receive adequate support to live comfortably, please indicate what support was lacking:
individual had no caregiver
1
10%
caregiver was unable to meet the individual’s needs
0
0%
individual lacked financial resources needed for adequate care
1
10%
individual lacked access to knowledgeable medical care providers
4
40%
individual lived at a great distance from medical care/support
5
50%
individual refused assistance
0
0%
Other
2
20%
In the last 12 months, has MSA created severe financial hardship for the individual diagnosed with MSA and/or the family?
no
20
51.3%
yes
19
48.7%
In the past 12 months, were there basic life necessities the individual diagnosed with MSA (and family) could not meet due to financial hardship?
no
31
88.6%
yes
4
11.4%
In the past 12 months, were there basic life necessities the individual diagnosed with MSA (and family) could not meet due to financial hardship?
no
31
88.6%
yes
4
11.4%
Please rate the overall quality of medical/support care received by the individual diagnosed with MSA in the past 12 months.:
Very good: MSA was understood by medical/treatment staff
11
24.4%
Good: MSA was not well understood, but medical/treatment staff made an effort to learn
18
40%
Fair: MSA was not really understood by medical/treatment staff, but care was adequate
7
15.6%
Poor: MSA was not understood by medical/treatment staff and care reflected a lack of knowledge
7
15.6%
Very poor: MSA was seldom discussed by medical/treatment staff at any level of care
2
4.4%
Transition Issues
If the individual was lost to MSA in the past 12 months, please indicate the cause of death:
Respiratory failure (stopped breathing)
5
50%
Respiratory infection (e.g.: pneumonia)
1
10%
Respiratory blockage (choking, obstruction)
0
0%
Heart attack
2
20%
Stroke
0
0%
Other complications from blood clot(s)
0
0%
Digestive system failure (unable to digest food)
0
0%
Digestive system blockage
0
0%
Head injury due to fall
0
0%
Other injury due to fall
0
0%
Other
2
20%
If the individual was lost to MSA during the past 12 months, how long after MSA diagnosis did he/she live?
