Vanderbilt MSA Survey Results 1998

November 21, 2001

Found it on my old machine! I don't remember if Sylvia ever wrote

up the long version before she left Vanderbilt.

Nan if you have a copy of the actual survey questions that would be

good to post. No word from Velma at Vanderbilt.

Love,

Pam

----

Date: Fri, 06 Nov 1998 15:56 -0600

Subject: Abstract on SDS/MSA from conference

Several of you requested that I post information from the SDS/MSA

survey on the SDS list. I will post the abstract that was

presented at the American Autonomic Society conference now. The

presentation itself involved a lot of graphs which may not print in

e-mail format. I am in the process of writing up a long version of

the information presented and will post it here when done

(hopefully before the millennium)

Sylvia

Quality of Life in MSA: A National Survey.

S. Dickinson, E. Garland, G. Farley and T. , Vanderbilt

University, Nashville, TN, USA

Multiple system atrophy (MSA) is a progressive neurodegenerative

disease that occurs sporadically and causes Parkinsonism,

cerebellar dysfunction, and autonomic insufficiency in any

combination. To better understand the physical effects and the

impact that this disorder has on lifestyle, we surveyed a national

population of MSA patients. Completed questionnaires were received

from 55 males (age 64.6±1.3 yr; mean±SEM) and 29 females (age

64.2±1.8 yr). 99% of the respondents were white and 93% were

married. 93% had completed high school, 46% were college graduates

and 21% had completed postgraduate studies. Symptoms included:

weakness in legs (87%), low BP standing (81%), constipation (77%),

bladder dysfunction (61%), imbalance w/o dizziness (55%), loud

snoring (50%), nasal stuffiness (42%), bladder infection (39%),

supine BP 160/90 or higher (33%), and mild anemia (13%). Among

medications, fludrocortisone was most commonly prescribed (50%).

Of the persons who took fludrocortisone, 71% felt the drug was

helpful. 26% of respondents were taking midodrine, 82% of whom

found it helpful. Sinemet use was reported by 42% of the subjects,

and 77% of these reported it to be helpful. A mean of 5.1±0.4 yr

elapsed between the onset of symptoms and diagnosis. A subsample

(n=12) contained responses of caregivers of deceased persons

diagnosed with MSA. Death occurred within 8.9±1.1 yr of symptom

onset (range of 1-18 yr). Difficulty in performing various

activities of daily living (ADLs) was assessed, with a score of

" 1 " representing no difficulty and " 5 " representing an inability to

perform the activity. 63% of subjects were unable to drive a car,

giving this activity the highest difficulty score (3.9), and 35%

were unable to walk outside (difficulty score 3.6). Only 2% of

respondents lived alone. 89% reported that the spouse was the

primary caregiver. While only 36% used services requiring a fee

(nurse, aide), 69% indicated that they did use medical equipment.

20% had quit work or retired in the last month, while 13% had

applied for disability.

Results from this survey provide information on quality of life

issues in the MSA population.

November 22, 2001

Pam,

That is worth putting on the website - need to add however that it is biased

toward an early death as 85% of the patients were still alive. It would be

interesting to hear from all the members of the list to find out how long

their patients survived. I know that some have gone early, but at least

three diagnosed initially as MSA (SDS) lived past 20 years.

Take care, Bill and Charlotte

====================================

Pam Bower wrote:

> Found it on my old machine! I don't remember if Sylvia ever wrote

> up the long version before she left Vanderbilt.

>

> Nan if you have a copy of the actual survey questions that would be

> good to post. No word from Velma at Vanderbilt.

>

> Love,

> Pam

>

> ----

>

> Date: Fri, 06 Nov 1998 15:56 -0600

>

> Subject: Abstract on SDS/MSA from conference

>

> Several of you requested that I post information from the SDS/MSA

> survey on the SDS list. I will post the abstract that was

> presented at the American Autonomic Society conference now. The

> presentation itself involved a lot of graphs which may not print in

> e-mail format. I am in the process of writing up a long version of

> the information presented and will post it here when done

> (hopefully before the millennium)

> Sylvia

>

> Quality of Life in MSA: A National Survey.

> S. Dickinson, E. Garland, G. Farley and T. , Vanderbilt

> University, Nashville, TN, USA

>

> Multiple system atrophy (MSA) is a progressive neurodegenerative

> disease that occurs sporadically and causes Parkinsonism,

> cerebellar dysfunction, and autonomic insufficiency in any

> combination. To better understand the physical effects and the

> impact that this disorder has on lifestyle, we surveyed a national

> population of MSA patients. Completed questionnaires were received

> from 55 males (age 64.6±1.3 yr; mean±SEM) and 29 females (age

> 64.2±1.8 yr). 99% of the respondents were white and 93% were

> married. 93% had completed high school, 46% were college graduates

> and 21% had completed postgraduate studies. Symptoms included:

> weakness in legs (87%), low BP standing (81%), constipation (77%),

> bladder dysfunction (61%), imbalance w/o dizziness (55%), loud

> snoring (50%), nasal stuffiness (42%), bladder infection (39%),

> supine BP 160/90 or higher (33%), and mild anemia (13%). Among

> medications, fludrocortisone was most commonly prescribed (50%).

> Of the persons who took fludrocortisone, 71% felt the drug was

> helpful. 26% of respondents were taking midodrine, 82% of whom

> found it helpful. Sinemet use was reported by 42% of the subjects,

> and 77% of these reported it to be helpful. A mean of 5.1±0.4 yr

> elapsed between the onset of symptoms and diagnosis. A subsample

> (n=12) contained responses of caregivers of deceased persons

> diagnosed with MSA. Death occurred within 8.9±1.1 yr of symptom

> onset (range of 1-18 yr). Difficulty in performing various

> activities of daily living (ADLs) was assessed, with a score of

> " 1 " representing no difficulty and " 5 " representing an inability to

> perform the activity. 63% of subjects were unable to drive a car,

> giving this activity the highest difficulty score (3.9), and 35%

> were unable to walk outside (difficulty score 3.6). Only 2% of

> respondents lived alone. 89% reported that the spouse was the

> primary caregiver. While only 36% used services requiring a fee

> (nurse, aide), 69% indicated that they did use medical equipment.

> 20% had quit work or retired in the last month, while 13% had

> applied for disability.

> Results from this survey provide information on quality of life

> issues in the MSA population.

>

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> unsubscribe by sending a blank email to

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November 22, 2001