The survey reveals the perceived impact of Lyme disease on people primarily from Connecticut and other areas. The first part is the actual survey. A summary of the results follows.
Participation was voluntary; the response by individuals in just the first four weeks (the basis of the survey results) was overwhelming.
I am posting this for the benefit of others who may find this helpful in dealing with legislators and the medical community.
This survey is still available for anyone who has not had an opportunity to participate. The results will be updated next year and perhaps annually should I continue to collect results beyond this calendar year. Go to http://lymesupport.com/lds/. The link is also available at the home page for this website (http://lymesupport.com).
Sincerely,
Nancy J. Berntsen, RN, BSN
[This message has been edited by nancyatlymesupportcom (edited 11 November 2004).]
Really interested in the results. Good job. Could you check on these addresses?
So, I tried going to your home page. That worked.
But, then I tried clicking on the survey results link.
That didn't work.
Can you give us a short summary?
Also, below is a copy of the table of the "multiple choice" type results on the questionaire. Bear in mind that there are also many "write-in" responses that follow the table when you look at the file itself at that link.
Each participant was asked to select his/her 5 areas of most concern regarding Lyme disease. Here are those results:
CT Total Selection
45 67 Inaccurate lab tests
61 96 Diagnosis problems
67 115 Treatment/cure issues
38 64 Difficulty finding a qualifed health care practitioner
24 40 Suppression of supportive research
35 60 Insurance coverage issues
1 1 Title or Husky coverage issues
15 26 Loss of time at job or school due to illness
30 44 Lack of an standard for treatment for early or chronic infection .
21 33 No acceptable standard for diagnosis
25 39 Inaccurate reporting of cases of Lyme disease
19 20 Tick control
5 6 Safety of donor blood in blood banks
2 3 Tick testing
22 39 Persecution and/or censorship of particular doctors
23 32 Over-reliance on faulty lab tests for diagnosis
34 51 Incompetant doctors
8 18 Disability issues
7 12 Education issues
6 10 Public health issues
3 4 Vaccine issues
13 19 Impact on family/marriage
6 8 Impact on friendships
5 11 Impact on job performance
16 30 Financial burden
7 19 Multiple family members infected with TBIs.
5 14 Other concerns (specify below)
For more information please see the results at the link above. I will see if there is another way to make the results available as a word document. Sorry for the inaccessibility of the other link.
Nancy
[This message has been edited by nancyatlymesupportcom (edited 15 November 2004).]