The purpose of this survey was to collect data and information regarding individuals lost to Multiple System Atrophy (MSA), as reported by caregivers, family members and loved ones.
The data collected through this survey was made available, at no cost, to groups, agencies and medical personnel that provide treatment, education and research for MSA.
Start of Survey #2
In which country/region does/did the individual reside for most of his/her life? 151 responses
| Region I: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont | 3 |
| Region II: New Jersey, New York, Puerto Rico, Virgin Islands | 6 |
| Region III: Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, West Virginia | 12 |
| Region IV: Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, Tennessee | 20 |
| Region V: Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin | 19 |
| Region VI: Arkansas, Louisiana, New Mexico, Oklahoma, Texas | 9 |
| Region VII: Iowa, Kansas, Missouri, Nebraska | 7 |
| Region VIII: Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming | 2 |
| Region IX: Arizona, California, Hawaii, Nevada (American Samoa, Guam, Northern Mariana Islands, Trust Territory of the Pacific Islands) | 11 |
| Region X: Alaska, Idaho, Oregon, Washington | 2 |
| Region XI: Canada | 11 |
| Region XII: Central America | 1 |
| Region XIII: Asia | 2 |
| Region XIV: Africa | 2 |
| Region XV: South America | 2 |
| Region XVI: Antarctica | 0 |
| Region XVII: Europe | 31 |
| Region XVIII: Australia (continent), New Zealand | 11 |
What was the individual’s gender? 158 responses
| male | 96 |
| female | 62 |
Were there conditions in his/her work environment that contributed to health issues? 149 responses
| Yes | 28 |
| No | 121 |
Diagnosis Data:
With which type of MSA was the individual diagnosed? 157 responses
| MSAc | 53 |
| MSAp | 47 |
| uncertain | 57 |
What was the age of the individual at the time of his/her death? 157 responses
| 40 or younger | 0 |
| 41-45 | 1 |
| 46-50 | 5 |
| 51-55 | 12 |
| 56-60 | 23 |
| 61-65 | 41 |
| 66-70 | 34 |
| 71-75 | 24 |
| 76-80 | 12 |
| older than 80 | 5 |
After receiving diagnosis of Multiple System Atrophy, approximately how long did he/she live ? 156 responses
| less than 1 year | 9 |
| 1 year | 10 |
| 2 years | 38 |
| 3 years | 25 |
| 4 years | 19 |
| 5 years | 20 |
| 6 years | 9 |
| 7 years | 11 |
| 8 years | 4 |
| 9 years | 6 |
| 10 or more years | 5 |
Living Conditions andCare:
Did he/she receive adequate support to live comfortably during his/her struggle with MSA?156 responsesyesno13.5%86.5%
| yes | 135 |
| no | 21 |
If the individual did not receive adequate support, please indicate what support was lacking: 28 responses
| Value | Count |
|---|---|
| individual had no caregiver | 2 |
| caregiver was unable to meet the individual’s needs | 9 |
| individual/caregiver lacked financial resources needed for adequate care | 30 |
| individual/caregiver lacked access to knowledgeable medical care providers | 2 |
| individual/caregiver lived at a great distance from medical care/support | 3 |
| individual refuses/refused assistance | 4 |
| individual/caregiver lacked access to knowledgeable medical care providers | 15 |
| Lack of support due to limited local resources | 1 |
Did MSA created financial hardship for him/her and the family? 157 responses
| yes | 73 |
| no | 84 |
If he/she MSA was covered by private or government-sponsored insurance, please state the level of satisfaction with regards to MSA-related care: 114 responses
| Very satisfied | 20 |
| Satisfied overall | 53 |
| Dissatisfied overall | 28 |
| Very dissatisfied | 13 |
Please indicate any needed services/assistance that the individual/family was unable to access due to financial hardship or lack of medical insurance: 59 responses
| Value | Count |
|---|---|
| Regular Neurological Care/Assessment | 12 |
| Regular General Health Care/Screening/Services | 7 |
| Medication | 10 |
| Home Health Care/Assistance | 35 |
| Assisted Living Facility Care | 16 |
| Mental Health Therapy/Counseling | 9 |
| Occupational Therapy | 16 |
| Physical/Movement Therapy | 19 |
| Speech Therapy | 15 |
| Swallowing Assessment/Therapy-Choking Prevention | 12 |
| Vision Assessment/Care | 9 |
| Dental Care | 16 |
| Wheelchair/Mobility Devices | 23 |
| Hospital/Specialized Bed | 10 |
| Dietary Needs/Supplements | 12 |
| Diapers, Catheters and Related Items | 31 |
| Diapers | 1 |
| I was basically responsible for my husbands health care needs. Obama Care really did not cover anything | 1 |
| not covered or limited visits | 1 |
Please rate the overall quality of medical care received by the individual in the last 12 months of his/her life: 157 responses
| Very good: MSA was well understood by medical/treatment staff | 10 |
| Good: MSA was not always well understood, but medical/treatment staff made the effort to learn | 65 |
| Fair: MSA was not really understood by medical/treatment staff, but care was adequate | 44 |
| Poor: MSA was not really understood by medical/treatment staff; care reflected a lack of knowledge | 23 |
| Very poor: MSA was seldom discussed by medical/treatment staff at any level; care was generally poor | 15 |
Please indicate the cause of his/her death: 142 responses
| Respiratory failure (stopped breathing) | 69 |
| Respiratory infection (e.g.: pneumonia) | 32 |
| Respiratory blockage (choking, obstruction) | 7 |
| Heart attack | 5 |
| Stroke | 3 |
| Other complications from blood clot(s) | 0 |
| Digestive system failure (unable to digest food) | 2 |
| Digestive system blockage | 2 |
| Head injury due to fall | 0 |
| Other injury due to fall | 1 |
| Septicemia | 1 |
| Sepsis, heart stopped, constipation, septic shock | 1 |
| Not 100% sure | 1 |
| starvation | 1 |
| see below | 1 |
| Congestive heart failure due to his illness. | 1 |
| certificate stated cardiac arrhythmia, but he did have 2 falls and bumped his head in the week preceding his passing. | 1 |
| Head injury led to | 1 |
| Wasted away-lost 70 lbs in 3 months due to numerous reasons. | 1 |
| Aspiration due to choking | 1 |
| Palleative | 1 |
| pneumonia also | 1 |
| Urinary tract infection | 1 |
| Died on her sleep. Heart stopped while sleeping. | 1 |
| Unsure | 1 |
| aspiration | 1 |
| west nile virus | 1 |
| Uti | 1 |
| With the help of medication (dormicum and morphine). Before that she was very stuffy, couldn’t say anyting and was restless | 1 |
| still living | 1 |
| Bed sore that would not heal | 1 |
Did he/she made arrangements to donate his/her brain for research? 155 responses
| No | 118 |
| Yes | 37 |
Did the individual/family receive adequate information and counseling to assist in the decision? 142
| No | 87 |
| Yes | 55 |
Had he/she participated in any type of clinical research related to Multiple System Atrophy? 155 responses
| no | 132 |
| yes | 23 |
Did he/she support the concept of a “patient’s right to die?” 140 responses
| no | 31 |
| yes | 109 |
End of Survey #2
dataMSA 