Date of Report: 01/01/2019
Number of Participants: 131
Summary:
The dataMSA Survey Representing Individual’s Lost to MSA was launched in July 2016. The purpose of the Survey was to allow caregivers and loved ones of those lost to MSA to share information and data.
the data presented has been shared with researchers and medical providers worlwide
Background Information:
In which country/region does/did the individual reside for most of his/her life?
| Region I: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont | 2 | 1.9% |
| Region II: New Jersey, New York, Puerto Rico, Virgin Islands | 4 | 3.9% |
| Region III: Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, West Virginia | 10 | 9.7% |
| Region IV: Alabama, Florida, Georgia, Kentucky, Mississippi, N/SCarolina,, Tennessee | 11 | 10.7% |
| Region V: Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin | 16 | 15.5% |
| Region VI: Arkansas, Louisiana, New Mexico, Oklahoma, Texas | 5 | 4.9% |
| Region VII: Iowa, Kansas, Missouri, Nebraska | 7 | 6.8% |
| Region VIII: Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming | 2 | 1.9% |
| Region IX: Arizona, California, Hawaii, Nevada (Trust Territory of the Pacific Islands) | 6 | 5.8% |
| Region X: Alaska, Idaho, Oregon, Washington | 2 | 1.9% |
| Region XI: Canada | 7 | 6.8% |
| Region XII: Central America | 0 | 0% |
| Region XIII: Asia | 0 | 0% |
| Region XIV: Africa | 2 | 1.9% |
| Region XV: South America | 2 | 1.9% |
| Region XVI: Antarctica | 0 | 0% |
| Region XVII: Europe | 19 | 18.4% |
| Region XVIII: Australia (continent), New Zealand | 8 | 7.8% |
What was the individual’s gender?
| male | 67 | 60.9% |
| female | 43 | 39.1% |
Were there conditions in his/her work environment that contributed to health issues?
| Yes | 21 | 20.8% |
| No | 80 | 79.2% |
Diagnosis Data:
With which type of MSA was the individual diagnosed?
| MSAc | 39 | 35.8% |
| MSAp | 33 | 30.3% |
| uncertain | 37 | 33.9% |
What was the age of the individual at the time of his/her death?
| 40 or younger | 0 | 0% |
| 41-45 | 1 | 0.9% |
| 46-50 | 5 | 4.5% |
| 51-55 | 6 | 5.5% |
| 56-60 | 17 | 15.5% |
| 61-65 | 28 | 25.5% |
| 66-70 | 21 | 19.1% |
| 71-75 | 20 | 18.2% |
| 76-80 | 8 | 7.3% |
| older than 80 | 4 | 3.6% |
After receiving diagnosis of Multiple System Atrophy, approximately how long did the he/she live ?
| less than 1 year | 2 | 1.9% |
| 1 year | 7 | 6.5% |
| 2 years | 25 | 23.1% |
| 3 years | 21 | 19.4% |
| 4 years | 12 | 11.1% |
| 5 years | 15 | 13.9% |
| 6 years | 8 | 7.4% |
| 7 years | 9 | 8.3% |
| 8 years | 2 | 1.9% |
| 9 years | 4 | 3.7% |
| 10 or more years | 3 | 2.8% |
Please indicate any of the following which he/she had experienced PRIOR to diagnosis of Multiple System Atrophy:
| Prior single traumatic brain injury | 1 | 1.2% |
| Prior multiple traumatic brain injuries | 0 | 0% |
| Prior single head trauma resulting in concussion | 12 | 14% |
| Prior multiple head traumas resulting in concussions | 2 | 2.3% |
| Prior history of chronic headaches | 7 | 8.1% |
| Prior neck/back injury | 13 | 15.1% |
| Prior multiple neck/back injuries | 5 | 5.8% |
| Prior high level of exposure to chemicals/toxins | 28 | 32.6% |
| Prior exposure to high levels of stress | 30 | 34.9% |
| Prior diagnosis of Post-Traumatic Stress Disorder (PTSD) | 6 | 7% |
| Prior diagnosis of Neurological Illness | 15 | 17.4% |
| Family history of neurological disease | 11 | 12.8% |
| Other | 18 | 20.9% |
Symptoms:
Please indicate all symptoms that he/she presented during his/her last year of life:
| Neuropathy (numbness, tingling in extremities) | 60 | 54.5% |
| Excessive Neuro-Response (jumpy reflexes) | 53 | 48.2% |
| Difficulty Walking | 106 | 96.4% |
| Impaired Balance | 105 | 95.5% |
| Fainting | 46 | 41.8% |
| Unstable Blood Pressure | 82 | 74.5% |
| Unstable Blood Sugar | 14 | 12.7% |
| Dystonia (muscle spasms/ rigidity) | 87 | 79.1% |
| Neuro-Motor Freeze (temporarily unable move at all) | 63 | 57.3% |
| Myalgia (muscle pain) | 63 | 57.3% |
| Tremors in Extremities | 66 | 60% |
| Impaired Fine Motor Skills | 100 | 90.9% |
| Impaired Gross Motor Skills | 82 | 74.5% |
| Head Drooped Down or To One Side | 83 | 75.5% |
| Dry Eyes | 42 | 38.2% |
| Teary Eyes | 38 | 34.5% |
| Eye Fatigue | 51 | 46.4% |
| Optic Nerve Damage | 8 | 7.3% |
| Impaired Auditory Discrimination | 20 | 18.2% |
| Difficulty Swallowing- Aspirating Foods and Liquids | 89 | 80.9% |
| Difficulty Swallowing-Choking/Blockage | 67 | 60.9% |
| Excessive Coughing | 25 | 22.7% |
| Dry Mouth | 41 | 37.3% |
| Overly Moist Mouth | 32 | 29.1% |
| Difficulty Breathing | 45 | 40.9% |
| Difficulty Speaking | 98 | 89.1% |
| Puffiness Under the Skin | 20 | 18.2% |
| Digestive Disorder (diarrhea, constipation, etc.) | 87 | 79.1% |
| Excessive Gas/Bloating | 15 | 13.6% |
| Irregularity | 51 | 46.4% |
| Impaired Bowel Control | 63 | 57.3% |
| Impaired Bladder Control | 96 | 87.3% |
| Impotence | 57 | 51.8% |
| Chronic Fatigue | 55 | 50% |
| Insomnia | 42 | 38.2% |
| Impaired REM Sleep Cycle | 48 | 43.6% |
| Confused Thought/Impaired Cognition | 45 | 40.9% |
| Impaired Memory | 31 | 28.2% |
| Inappropriate Display of Emotions (crying, anger, etc. for no apparent reason) | 44 | 40% |
| Excessive Reaction to Stress | 23 | 20.9% |
| Chronic Headaches | 9 | 8.2% |
| Depression | 67 | 60.9% |
| Anxiety | 48 | 43.6% |
| Suicidal Ideation/Thoughts | 8 | 7.3% |
| Attempt(s) at Suicide | 0 | 0% |
| Chills/Sweating/Overheating | 50 | 45.5% |
| Rashes, Dry Skin, Itchiness | 42 | 38.2% |
| Other | 12 | 10.9% |
Please indicate if any of the following caused his/her symptoms to worsen:
| Exposure to heat | 45 | 45.5% |
| Stress | 51 | 51.5% |
| Fatigue/exertion | 70 | 70.7% |
| Lack of sleep | 48 | 48.5% |
| Diet | 19 | 19.2% |
| Medication | 35 | 35.4% |
| Loud noise | 18 | 18.2% |
| Bright or pulsing/flashing light | 15 | 15.2% |
| Confusion | 23 | 23.2% |
| Depression | 38 | 38.4% |
| Other | 6 | 6.1% |
Please indicate if any of the following helped alleviate/reduce his/her symptoms:
| Diet | 13 | 16.9% |
| Games, Puzzles, etc. | 10 | 13% |
| Exercise/Physical Activity | 24 | 31.2% |
| Physical Therapy/ Movement Therapy | 37 | 48.1% |
| Swallow Therapy | 16 | 20.8% |
| Acupuncture | 2 | 2.6% |
| Light Therapy | 4 | 5.2% |
| Speech Therapy | 19 | 24.7% |
| Supplements (please describe below) | 9 | 11.7% |
| Socialization | 32 | 41.6% |
| Medication | 38 | 49.4% |
| Other | 10 | 13% |
Living Conditions and Care:
Did he/she receive adequate support to live comfortably during his/her struggle with MSA?
| yes | 95 | 87.2% |
| no | 14 | 12.8% |
If the individual did not receive adequate support, please indicate what support was lacking:
| individual had no caregiver | 1 | 5.6% |
| caregiver was unable to meet the individual’s needs | 5 | 27.8% |
| individual/caregiver lacked financial resources needed for adequate care | 20 | 111.1% |
| individual/caregiver lacked financial resources needed for adequate care | 20 | 111.1% |
| individual/caregiver lacked access to knowledgeable medical care providers | 9 | 50% |
| individual/caregiver lived at a great distance from medical care/support | 1 | 5.6% |
| individual refuses/refused assistance | 3 | 16.7% |
| Other | 1 | 5.6% |
Did MSA created financial hardship for the him/her and the family?
| yes | 52 | 47.7% |
| no | 57 | 52.3% |
If he/she MSA was covered by private or government-sponsored insurance, please state the level of satisfaction with regards to MSA-related care:
| Very satisfied | 15 | 18.5% |
| Satisfied overall | 40 | 49.4% |
| Dissatisfied overall | 17 | 21% |
| Very dissatisfied | 9 | 11.1% |
Please indicate any needed services/assistance that the individual/family was unable to access due to financial hardship or lack of medical insurance:
| Regular Neurological Care/Assessment | 7 | 17.9% |
| Regular General Health Care/Screening/Services | 3 | 7.7% |
| Medication | 5 | 12.8% |
| Home Health Care/Assistance | 25 | 64.1% |
| Assisted Living Facility Care | 12 | 30.8% |
| Mental Health Therapy/Counseling | 3 | 7.7% |
| Occupational Therapy | 12 | 30.8% |
| Physical/Movement Therapy | 12 | 30.8% |
| Speech Therapy | 10 | 25.6% |
| Swallowing Assessment/Therapy-Choking Prevention | 9 | 23.1% |
| Vision Assessment/Care | 5 | 12.8% |
| Dental Care | 9 | 23.1% |
| Wheelchair/Mobility Devices | 16 | 41% |
| Hospital/Specialized Bed | 5 | 12.8% |
| Dietary Needs/Supplements | 7 | 17.9% |
| Diapers, Catheters and Related Items | 28 | 71.8% |
| Diapers, Catheters and Related Items | 28 | 71.8% |
| Other | 1 | 2.6% |
Please rate the overall quality of medical care received by the individual in the last 12 months of his/her life:
| Very good: MSA was well understood by medical/treatment staff | 8 | 7.3% |
| Good: MSA was not always well understood, but medical/treatment staff made the effort to learn | 48 | 44% |
| Fair: MSA was not really understood by medical/treatment staff, but care was adequate | 32 | 29.4% |
| Poor: MSA was not really understood by medical/treatment staff; care reflected a lack of knowledge | 14 | 12.8% |
| Very poor: MSA was seldom discussed by medical/treatment staff at any level; care was generally poor | 7 | 6.4% |
Transition Issues
Please indicate the cause of his/her death:
| Respiratory failure (stopped breathing) | 55 | 53.4% |
| Respiratory infection (e.g.: pneumonia) | 20 | 19.4% |
| Respiratory blockage (choking, obstruction) | 7 | 6.8% |
| Heart attack | 2 | 1.9% |
| Stroke | 1 | 1% |
| Other complications from blood clot(s) | 0 | 0% |
| Digestive system failure (unable to digest food) | 1 | 1% |
| Digestive system blockage | 1 | 1% |
| Head injury due to fall | 0 | 0% |
| Other injury due to fall | 0 | 0% |
| Other | 16 | 15.5% |
Did he/she made arrangements to donate his/her brain for research?
| No | 81 | 75% |
| Yes | 27 | 25% |
Did the individual/family receive adequate information and counseling to assist in the decision?
| No | 62 | 59% |
| Yes | 43 | 41% |
Had he/she participated in any type of clinical research related to Multiple System Atrophy?
| no | 88 | 81.5% |
| yes | 20 | 18.5% |
Did he/she support the concept of a “patient’s right to die?”
| no | 24 | 24% |
| yes | 76 | 76% |
END OF SURVEY RESPONSES
