| 2003 Thyroid Survey Results -- Part 4 | |
By Mary J. Shomon
This is the first large-scale quality of life survey of
thyroid patients, and the first to look at critical patient concerns such as
unrelieved symptoms, weight problems, attitudes toward patient organizations,
smoking behavior, and effective treatments and solutions.
A summary of the survey findings is located at:
http://thyroid.about.com/library/weekly/aasurveysumm.htm
From late 2001 to 2002, a survey was conducted with readers
of Mary Shomon’s various thyroid disease websites. Final results will be
published later in 2003, but preliminary results, based on a tally of 907
respondents, are being published here, to bring increased visibility to thyroid
issues to help highlight the January 2003 commemoration of Thyroid Awareness
Month.
Survey Page 1, 2, 3, 4
The tally of results of the survey are as follows:
What are your favorite books about thyroid disease?
Total Number of Responses / Percentage of All 907 Respondents
310
34.2%
Living Well With Hypothyroidism, by Mary Shomon
276
89.0%
30.4%
The Thyroid Solution, by Ridha Arem
120
38.7%
13.2%
Hypothyroidism: The Unsuspected Illness, by Broda Barnes
60
19.4%
6.6%
The Thyroid Sourcebook, by Sara Rosenthal
59
19.0%
6.5%
Thyroid Power, by Richard and Karilee Shames
55
17.7%
6.1%
Solved: The Riddle of Illness, By Stephen Langer and James Scheer
45
14.5%
5.0%
Screaming to be Heard
6
1.9%
0.7%
How I Reversed My Hashimot's Thyroiditis
4
1.3%
0.4%
Your Thyroid: A Home Reference
3
1.0%
0.3%
Is Your Thyroid Making You Fat
3
1.0%
0.3%
Thyroid & Its Diseases
1
0.3%
0.1%
Thyroid Tears
1
0.3%
0.1%
Why Am I So Tired
1
0.3%
0.1%
The Thyroid Guide
1
0.3%
0.1%
Your Thyroid - Wood and Cooper
1
0.3%
0.1%
Could It Be My Thyroid
1
0.3%
0.1%
Thyroid Disease: The Facts
1
0.3%
0.1%
Sick and Tired of Being Sick and Tired
1
0.3%
0.1%
The Metabolic Treatment of Fibromyalgia
1
0.3%
0.1%
From Fatigue to Fantastic
1
0.3%
0.1%
Do you belong to any thyroid patient organizations?
Total Number of Responses / Percentage of All 907 Respondents
78
8.6%
Thyroid Foundation of America
25
32.1%
2.8%
Mary's Site (these were write in answers, not an official "organization")
25
32.1%
2.8%
Thyroid Cancer Survivors Association
14
17.9%
1.5%
Local Support Group
8
10.3%
0.9%
Thyroid UK
4
5.1%
0.4%
National Graves Disease Foundation
4
5.1%
0.4%
American Foundation of Thyroid Patients
2
2.6%
0.2%
British Thyroid Foundation
2
2.6%
0.2%
The Thyroid Society
2
2.6%
0.2%
Broda Barnes Institute
2
2.6%
0.2%
Do you feel that these thyroid patient groups fairly represent patients?
Total Number of Responses / Percentage of All 907 Respondents
164
18.1%
Yes
98
59.8%
10.8%
No, please explain
66
40.2%
7.3%
What do you think are the best services/features are of the group(s) you belong to?
Total Number of Responses / Percentage of All 907 Respondents
35
3.9%
Information
33
94.3%
3.6%
Support Groups
21
60.0%
2.3%
News/Newsletters
9
25.7%
1.0%
Web Site
8
22.9%
0.9%
List of doctors
8
22.9%
0.9%
What do you think are the downsides or limitations of the above groups? Please specify
Total Number of Responses / Percentage of All 907 Respondents
28
3.1%
Not enough info on alternative treatments
11
39.3%
1.2%
Give false info about treatment options/drugs
9
32.1%
1.0%
Drug Company funding bias
5
17.9%
0.6%
No one-on-one interactions
2
7.1%
0.2%
no phone numbers for help/advice
1
3.6%
0.1%
Not enough professional input
1
3.6%
0.1%
Cannot prescribe medications
1
3.6%
0.1%
Lack of funds and political power
1
3.6%
0.1%
What sorts of research topics do you think pharmaceutical companies and patient organizations should be funding/studying?
Total Number of Responses / Percentage of All 907 Respondents
585
64.5%
Weight loss problems with thyroid disease
573
97.9%
63.2%
Need for T3 and role of T3 in alleviating symptoms
560
95.7%
61.7%
Cures for autoimmune thyroid condition
541
92.5%
59.6%
Causes of thyroid disease
519
88.7%
57.2%
Long term safety of T3
511
87.4%
56.3%
Prevention of thyroid disease
497
85.0%
54.8%
Optimal TSH levels by gender, age and hormonal status
448
76.6%
49.4%
Time released delivery of thyroid drugs
256
43.8%
28.2%
Alternate delivery forms for thyroid drugs (i.e., patch, cream)
240
41.0%
26.5%
Connections between RAI and cancer
99
16.9%
10.9%
Long-term use of antithyroid drugs vs. RAI
80
13.7%
8.8%
Other (summarized)
35
6.0%
3.9%
Alternate medications/treatments
16
2.7%
1.8%
Thyroid and infertility
5
0.9%
0.6%
Self-Testing
4
0.7%
0.4%
Links with other problems
4
0.7%
0.4%
Do you feel that the thyroid pharmaceutical companies are influencing the endocrinology community?
Total Number of Responses / Percentage of All 907 Respondents
549
60.5%
Yes
458
83.4%
50.5%
No
91
15.5%
10.0%
If you feel that there is influence, do you feel that it is unfair, or unduly favorable to the drug companies, or in favor of patients?
Total Number of Responses / Percentage of All 907 Respondents
495
54.6%
Unfair to patients
468
94.5%
51.6%
Favorable to patients
15
3.0%
1.7%
Not Sure
12
2.4%
1.3%
Note: the survey was conducted among those who volunteered to submit information, and therefore is informational, and not for statistical purposes.
All survey contents and survey results © Copyright Mary Shomon, 2002-2003.
