MGFI Patient Survey      

Because of the scope and importance of this project, MGFI sought technical assistance from Dr. Gayla Nieminen of Assessment Unlimited, a consultant with many years experience in survey research. Assessment Unlimited (AU) assisted MGFI in planning the survey and developing the questionnaire as well as compiling and analyzing the responses.
 

DESIGN AND ADMINISTRATION OF THE SURVEY
 

The survey instrument was designed jointly by Dr. Nieminen and the MGFI Executive Board. Over a series of meetings, the Board identified the critical issues to be covered in the survey, Dr. Nieminen drafted survey items and Board members critiqued and edited the items. A series of drafts were pilot tested, leading to a questionnaire consisting of three pages of items covering demographic information, family history and the respondent's experience with MG; an additional page addressed informational topics.

MGFI staff drew a sample of 400 of its members from Illinois and elsewhere in the United States. The survey was mailed to this sample with a cover letter from Gerald Tarka, Executive Director, explaining the survey's purpose and announcing the date for returning the survey. The mailing also included a pre-addressed, stamped return envelope containing AU's address. Anonymity was assured to responders in two ways: the questionnaires were not coded in any way for follow-up, and the questionnaires were mailed directly to AU for data entry.

SURVEY FINDINGS
 

Of the 400 questionnaires mailed, a total of 98 were completed and returned, representing a response rate of 25%. The respondent's zip code was requested and tallied to form a picture of those who returned the survey; 24 were from outside of Illinois, 50 were from the Chicago/Northern Illinois area (including Rockford), and the remaining 20 were from central and southern Illinois.

The responses to each closed-end survey item are displayed on a copy of the questionnaire, which appears as an appendix to this report (available to qualified individuals at the MGFI office). Also in the appendix is a complete transcript of the written responses to open-end survey items and "other" (uncategorized) responses to closed-end items. This narrative report provides a summary of those data. The numbers reported here are the actual number of people who made each response.
A word of caution. Because of the low return rate, it is not possible to assume that the information provided by those who answered the survey necessarily represent the MGFI community as a whole. The responses can certainly be useful in planning educational and informational activities, as those who responded are probably the ones most interested and most likely to participate in MGFI endeavors. However, caution is required in interpreting the findings regarding MG experiences and family history: they may or may not reflect those of persons with MG throughout Illinois or throughout the United States.

DEMOGRAPHIC INFORMATION

The respondents were split fairly evenly by sex: 45 were male and 53 were female. The average age was 63. Most respondents (86) were Caucasian, three were African-American, two were "other" and nine did not give their race. When asked their current employment status, 51 said they are retired or not working, 20 are employed full time, 12 are employed part time, and two are not employed but available for work. Fifteen did not respond to the employment question. Thirty-six respondents said they are not disabled, 24 said they are partly disabled and 15 said they are fully disabled; again, 15 did not respond.

MYASTHENIA GRAVIS INFORMATION

Type of MG

The survey included a question about the type of MG that the respondent has; it was anticipated that each person would mark one of the three options. In fact, 13 marked "ocular," three marked "bulbar" and 35 marked "generalized/systemic;" another 30 respondents marked some combination of two of the choices, and 16 marked all three choices.

Onset of MG

Several survey items focused on the initial onset of the disease. When asked how old they were when they first experienced symptoms, the respondents gave ages between 10 and 77 years, with an average of 47. The most commonly reported initial symptoms were drooping eyelid (68) and double vision (59). Between 43 and 48 respondents also mentioned fatigue, weakness in a limb, slurred speech, or difficulty chewing or swallowing. Following the first symptoms, the disease took between one month and eight years to be diagnosed, according to the survey respondents. More than half (56) were diagnosed by a neurologist, 15 by an ophthalmologist and eight by their family doctor.

Current Status

When asked to characterize the disease at present, 21 respondents said they have no symptoms and are not currently on medication. Of those with symptoms at the time of the survey, 58 said that the symptoms are mostly or entirely controlled by medication, 15 said that the symptoms are not well-controlled by medication, and three said that they take no medication for their symptoms. Most (58) currently see a neurologist for their MG; another 36 see their family doctor and 24 see an ophthalmologist.

When asked if their occupation has changed in any way as a result of MG, nearly half (44) said that it had. When asked to describe the changes, 24 said that they now take more breaks or rest periods or have learned to pace themselves during their work. In addition, 18 said that they quit work or took early retirement as a result of the MG diagnosis. Other changes at work include no heavy lifting (15), reduced work hours (13) or a change in jobs (9). Other limitations added by the respondents focused primarily on decreases in strength and endurance in everyday activities.

Sixty-two respondents carry some type of medic alert information. For 35 respondents, it is a card, for eight a bracelet; 13 carry both. Five others wear a necklace ID or have an ID on their key chains.

A final question in this section was: "When you look back at the initial symptoms of your first experience with Myasthenia Gravis, do you believe that there was an event, activity, medication, etc. that "triggered" your first MG symptoms?" Thirty-nine respondents said that they do feel that there was a triggering event, while 53 said that there was not. Those who answered yes were asked to describe what they believe was the cause. Forty-two respondents listed causes; 20 of these can be characterized as an unusual physical or emotional stress over some period of time, sometimes with a sudden onset. Another 10 respondents described an accident or illness that they believe triggered the MG symptoms. (See the Appendix for a complete transcript of responses.)

FAMILY HISTORY

Of the 98 persons who returned their surveys, 12 have blood relatives who also have MG. Those listed included parents, grandparents, brothers or sisters, aunts or uncles, cousins, and children. In addition, 31 said that they have blood relatives with another autoimmune disease. Of these, eight have relatives with lupus, seven with rheumatoid arthritis, five with MS, and two each with Parkinson's and ALS. Several other diseases were also mentioned. When asked if they have any other chronic illnesses at present, 52 said that they do.

INTEREST IN INFORMATIONAL TOPICS RELATING TO MG

Only ten of the 98 respondents said that they currently attend any of the MGFI support group meetings. When asked why they are not currently attending, the largest number of respondents said that distance was the most important factor.
All of the topics listed were of interest to a number of the respondents and most topics were of interest to more than half. Respondents expressed highest interest in current research on MG and current findings in treatment; effects of weather changes; nutritional advice; exercise; and what to take for colds and other everyday ills. There was less interest in information about insurance and ICD codes. Other topics of interest to many were dealing with stress, coping strategies, and information for spouses and care givers.
When asked in what format they would prefer to receive this information, respondents overwhelmingly said that they prefer written material (newsletter or pamphlet) over a lecture or panel of experts format.
Sixty-two respondents carry some type of medic alert information. For 35 respondents, it is a card, for eight a bracelet; 13 carry both. Five others wear a necklace ID or have an ID on their key chains.
A final question in this section was: "When you look back at the initial symptoms of your first experience with Myasthenia Gravis, do you believe that there was an event, activity, medication, etc. that "triggered" your first MG symptoms?" Thirty-nine respondents said that they do feel that there was a triggering event, while 53 said that there was not. Those who answered yes were asked to describe what they believe was the cause. Forty-two respondents listed causes; 20 of these can be characterized as an unusual physical or emotional stress over some period of time, sometimes with a sudden onset. Another 10 respondents described an accident or illness that they believe triggered the MG symptoms.

MEDICATION

Eleven medications often prescribed for MG were listed in the survey; respondents were asked to mark which ones they take now or took in the past and to indicate any reasons they may have had for stopping medications that they no longer take. The most commonly-taken medications are Mestinon (51 currently taking), Prednisone (33 currently taking), Imuran (16 currently) and Mestinon Timespan (11 currently). Only a handful currently take any of the other mediations listed. Larger numbers of respondents have taken each of these in the past but no longer do so: 54 said they have taken Mestinon in the past, 38 have taken Prednisone, 35 have taken Mestinon Timespan and 21 have taken Imuran. The most common reason for discontinuing any of these was the medication's side effects.

TREATMENTS

Several possible treatments for MG were included in the survey; respondents indicated which ones they have or had in the past, and how often. Twenty respondents said that they had plasmapheresis treatments in the past; none are currently receiving these treatments. Three had the treatments once a week, three had them three times a week, three had them once a month, five had just one or two treatments and six had a limited number over an irregular period.

Twelve respondents had intravenous immunoglobulin (IVIG) treatments, generally not on a regular weekly or monthly basis. Only one respondent is currently having such treatments. Forty-three have had a thymectomy; the average age for the operation was mid-forties, although the range was from 22 to 74 years of age. Eighteen said that the operation resulted in much improvement, 12 said it provided some improvement and 12 said there was no improvement as a result of the thymectomy. Fifteen have had mental health counseling in the past and seven are now receiving counseling.

Of the 98 persons who returned their surveys, 12 have blood relatives who also have MG. Those listed included parents, grandparents, brothers or sisters, aunts or uncles, cousins, and children. In addition, 31 said that they have blood relatives with another autoimmune disease. Of these, eight have relatives with lupus, seven with rheumatoid arthritis, five with MS, and two each with Parkinson's and ALS. Several other diseases were also mentioned. When asked if they have any other chronic illnesses at present, 52 said that they do.

SUMMARY

The survey conducted by the Myasthenia Gravis Foundation of Illinois, Inc. in February 2003 gathered data on a large number of topics. A total of 98 persons (25 percent) returned their questionnaires. Three-fourths of the respondents were from Illinois, most from the Chicago area or Northern Illinois region. Some caution is required in interpreting the responses of this group; the information provided by those who returned their questionnaires may or may not represent the experiences of the MG community as a whole. Although the responses of this small sample may not give the kind of valid and specific information about the current status of persons with MG in Illinois that one would prefer, the responses can certainly be useful in planning educational and informational activities. The disease status and experiences reported by respondents vary across the spectrum. Some reported no symptoms and no medication; others report symptoms that severely limit their activities. More than half of those who responded are retired. The average age of first symptoms among the respondents was 47. Most were diagnosed by a neurologist and almost all are seeing a specialist for MG. Beyond medication, few are receiving specialized treatment, such as IVIG or plasmapheresis. A little less than half have had a thymectomy, and most who had the operation said that they have experienced at least some improvement as a result. About 40 percent of those who responded believe that there was an activity or incident that triggered the onset of MG. A small number have blood relatives with MG, but almost one-third have blood relatives with other autoimmune diseases. Most have at least one other chronic illness or condition in addition to MG.

Most of the topics that the MGFI has identified for possible programs or pamphlets were endorsed by a large number of respondents. There is clearly an opportunity here to provide information to an appreciative audience. Given that most of the respondents do not currently attend MGFI meetings, mostly due to distance, it is perhaps not surprising that few requested in-person formats; large majorities have requested that information be provided in written form. Nevertheless, it may still be possible to offer lectures or panel discussions to a smaller audience in the greater Chicago area.