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Internet Survey of Childhood Hypothyroidism

Internet Survey of Childhood Hypothyroidism

Vinna Nam BS1, Eric Chen BS2, Steven Young BS3, Anh N. Tran BA1, Samantha Madala4, Gloria Wu5

1University of California, Berkeley; 2 University of British Columbia; 3University of California, Irvine; 4Harker School, San Jose, CA; 5Tufts University School of Medicine

Abstract Public health education is an important aspect of healthcare delivery. Surveys, we can assess public health education and interests. Standard telephone and face-to-face interviews are often time consuming and expensive while Internet surveys are more cost effective. Internet surveys can be easily distributed on high traffic Internet forums. Hypothyroidism, an important problem in developmental delay, affects approximately 14.4 million of the American population1 and 48.4 to 115.5 million of the Indian population2. With an even higher estimation of subclinical hypothyroidism in both countries3, this disease should be of concern to the global endocrinology community. Purpose: To assess the level of knowledge of childhood hypothyroidism using an Internet questionnaire. Methods: We created an Internet questionnaire designed to test the public’s knowledge of childhood hypothyroidism. The questionnaire was posted online on social media platforms such as Facebook  and on other online distribution services over a three-month period in 2012. Respondents (RE) were required to be ≥ 18 years of age. Conclusions: Overall knowledge about childhood hypothyroidism in the US and India is low based on our Internet questionnaire. In our sample, gender differences in knowledge about hypothyroidism exist to a greater extent in India than in the US. This may be a result of overall lower age and education in the India sample or the self-selection nature of the Internet survey sample. Nonetheless, increased health education addressing causes and symptoms of hypothyroidism is needed. Introduction Hypothyroidism is a disease that is under-diagnosed in the world3. Its prevalence in the United States is 14.4 million (4.6%) people1, compared to 48.4-116.6 million (3.9%-9.4%) in India2 and 90 million (6.6%) in China4. In the US, congenital hypothyroidism is sporadic, yet is increasing. From 1991 to 2000, there was a 30.4% increase in the incidence rate of congenital hypothyroidism in the US5. The greater incidence of congenital hypothyroidism may be due to the increasing diversity of the US population with more races and ethnicities6,7,8,9. The incidence rate of congenital hypothyroidism in India is 1 in 2000 live births11 (the number of live birth in India 27,098,000 12); in Europe is 1 in 380113 ; in China is 1 in 2050 14.  If congenital hypothyroidism remains untreated, it can lead to intellectual disability and abnormal growth. Therefore, congenital hypothyroidism is common globally and it is important to obtain early diagnosis 13.14,15. We wanted to assess health awareness of this problem in the world since hypothyroidism affects more than 130 million people worldwide11. We tested the hypothesis that knowledge of childhood hypothyroidism may differ by country and gender. The Internet questionnaire is a useful survey tool16.  Internet Users worldwide usually means those with education, having access to a computer, male and female users are approximately equal. For example in the US, 85% of all males and females use the Internet and the largest demographic group is the 18-40 years old17.  In India, 75% of the users are under age 35 years 18,19. It is estimated that China has 560-590 million Internet users 20.  Thus, an Internet questionnaire allowed us global outreach. We used the Internet to reach as much of the global population as possible. In the US, 22% of the total population uses the Internet18. According to the Pew Research Center, users between the ages of 18 and 29 make up the largest group of Internet users21. The largest group of Internet users belongs to China, with 41% of its population on the world wide web22. Out of these millions of users, 56.1% are 29 years of age or younger25. An additional 25.3% of Internet users are between 30 and 39. Moreover, the third largest group of Internet users resides in India: 6% of its population uses the Internet  –75% of which are under the age of 3525. Google Trends, which analyzes total number of searches on Google over time, shows that the search term is less well searched compared to diabetes and heart disease despite such high prevalence worldwide23 (Figure 1). We compared medical terms from Google Trends23 in order to assess publics’ interest on different endocrine diseases (Figure 1).

FIGURE 1: Google Trends of Different Search Topics Purpose The purpose of this survey is to use an Internet questionnaire to analyze the level of awareness of and knowledge of childhood hypothyroidism. We used Internet surveys in order to access world health awareness in a cost-effective, immediate, and convenient way. Methods We created a short Internet questionnaire designed to test the public’s knowledge of childhood hypothyroidism. The online survey was primarily hosted on freeonlinesurveys.com from October 2012 to April 2013 due to this platform’s ability to automatically analyze data. Other online distribution services that we placed the questionnaire included social media platforms such as Facebook, Facebook pages of the authors, and Facebook advertisements, WordPress, Reddit, Craigslist’s free posting section, and blogs. Respondents (RE) were required to be at least 18 years of age or older. Pearson’s Chi-squared test and Student t-test were used for statistical analysis with Stata 12 software. The following questionnaire was used (page 4). Questions 1,2,3,4, 6, and 12 were asked in order to obtain respondent demographics, without being invasive breaching privacy concerns. Question 5 arose because of the lay public’s beliefs about autism and hypothyroidism, although this is not supported by medical literature. Questions 7, 8, 13, and 15 were created to assess knowledge about symptoms and signs of hypothyroidism. Questions 9, 10, and 11 were to assess the participants’ awareness of the doctor’s physical examinations. Questions 14, 17, and 18 were created to assess general knowledge about thyroid disorders. Question 16 was created to assess the knowledge of the type of specialist that sees these diseases. Question 19 was created to assess people’s reaction to the need of thyroid screening. Question 20 was used to assess dissemination and origin of survey. Questionnaire [1] What is your gender? [2] How old are you? [3] What is your education? Grade 1-6; 7-8; 9-12; College; More than college [4] What is your ethnicity? Native American; Asian; South Asian; Pacific Islander; African American; Caucasian; Hispanic; Other [5] Do you know that there might be a connection between hypothyroid disorder and autism? Yes; No (no connection); Unsure [6] Are you a parent of someone with hypothyroidism? Yes; No (not a parent); Unsure (about my child/children) [7] Do you or any of your children show any symptoms of fatigue, constipation, depression, weight gain, or constant coldness? Yes; No; Unsure [8] Do you or any of your children show any signs of bulging eyes, large throat gland, or hair loss? Yes; No; Unsure [9] (If you answered yes to [7] and/or [8]) has your pediatrician discussed thyroid gland disorders with you? Yes; No; Not sure; N/A (no children) [10] (If you answered yes to [7] and/or [8]) has your doctor felt you or your child’s neck for thyroid problems? Yes; No; Not sure; N/A (no children) [11] Has a doctor referred you or your child to conduct a thyroid blood test? Yes; No; N/A (no and don’t have children) [12] Do you and/or your family members have hypothyroidism? Yes; No; Unsure [13] In children, what are the symptoms of hypothyroidism? (Check all that apply) Always tired; Reading problems; Anxious/nervous; Unable to complete homework; Disorganized; Too focused; Forgetfulness; (not sure) [14] Which of these glandular disorders have you heard of? (Check all that apply) Diabetes; Pituitary disorder; Thyroid disorder; None [15] In children, what causes the thyroid gland to be under-active? (Check all that apply) Family history of hypothyroidism; Developmental problems; Gender; Physical environment; Diet; Autism; Unknown cause; Unsure [16] What is an endocrinologist? (Check all that apply) Doctor that treats diabetes; Psychiatrist that treats obesity; Doctor that treats thyroid disease; Brain surgeon; Doctor that treats glandular disease; Unsure [17] What is hypothyroidism? Overactive thyroid gland; Underactive thyroid gland; Cancer; Diabetes; Unsure [18] What is hyperthyroidism? Overactive thyroid gland; Underactive thyroid gland; Obesity; Heart disease; Unsure [19] Thyroid problems can be diagnosed with a simple test. Do you think children with learning issues should be screened for thyroid problems? Yes; No [20] How did you hear about this survey? Results We received 3044 total responses from 22 countries. However, since the majority (RE=2447) of the respondents were from the United States and India, we concentrated our analysis on this population of responders. China had no respondents because Facebook is censored24. Some of our other countries included Canada, United Kingdom, Ireland, Iceland, Australia, South Africa, South Korea, etc.  

 

FIGURE 3: Age Demographics for US and India Respondents There were 1024 United States respondents among which 303 were male and 901 were female. US respondents were in the age range of 31 to ≥ 51 years old. There were 1243 Indian respondents among which 706 were male and 537 were female. Compared to the US, the majority of Indian responses were collected from younger age (Figure 3).

Table 1 shows the respondents’ previous experience with hypothyroidism by assessing following questions: [6] Are you a parent of someone with hypothyroidism? Yes; No (not a parent); Unsure (about my child/children) [7] Do you or any of your children show any symptoms of fatigue, constipation, depression, weight gain, or constant coldness? Yes; No; Unsure [8] Do you or any of your children show any signs of bulging eyes, large throat gland, or hair loss? Yes; No; Unsure [9] (If you answered yes to [7] and/or [8]) has your pediatrician discussed thyroid gland disorders with you? Yes; No; Not sure; N/A (no children) [10] (If you answered yes to [7] and/or [8]) has your doctor felt you or your child’s neck for thyroid problems? Yes; No; Not sure; N/A (no children) [11] Has a doctor referred you or your child to conduct a thyroid blood test? Yes; No; N/A (no and don’t have children) [12] Do you and/or your family members have hypothyroidism? Yes; No; Unsure [14] Which of these glandular disorders have you heard of? (Check all that apply) Diabetes; Pituitary disorder; Thyroid disorder; None [19] Thyroid problems can be diagnosed with a simple test. Do you think children with learning issues should be screened for thyroid problems? Yes; No Table 1: Respondent Experience with Hypothyroidism

 

 

US (%)

India (%)

Chi-squared

df

P-value

Q6

Yes

24 (2.00)

73 (5.90)

24.18

1

<0.001

 

No

1180 (98.00)

1170 (94.12)

 

 

 

Q7

Yes

350 (29.07)

413 (33.15)

4.92

1

0.02

 

No

854 (70.93)

830 (66.77)

 

 

 

Q8

Yes

114 (9.47)

211 (16.98)

29.92

1

<0.001

 

No

1090 (90.53)

1032 (83.02)

 

 

 

Q9

Yes

85 (7.06)

143 (11.5)

14.30

1

<0.001

 

No

1119 (92.94)

1100 (88.50)

 

 

 

Q10

Yes

169 (14.04)

95 (9.64)

25.98

1

<0.001

 

No

1035 (85.96)

1148 (92.36)

 

 

 

Q11

Yes

214 (17.77)

189 (15.21)

2.93

1

0.087

 

No

990 (82.22)

1054 (84.79)

 

 

 

Q12

Yes

230 (19.10)

137 (11.20)

31.33

1

<0.001

 

No

974 (80.90)

1106 (89.98)

 

 

 

Q14

Diabetes

1120 (93.02)

1108 (89.14)

11.32

1

<0.001

 

Pituitary dz

727 (60.38)

281 (22.61)

360.27

1

<0.001

 

Thyroid dz

1059 (87.96)

898 (72.24)

94.28

1

<0.001

 

None

37 (3.07)

50 (4.02)

1.61

1

0.20

Q19

Yes

1032 (85.71)

1064 (85.6)

0.0066

1

0.94

 

No

172 (14.29)

179 (14.40)

 

 

 

According to our results, respondents from India as well as their children knew more about hypothyroidism and had discussed thyroid gland disorders with pediatricians.  However, interestingly, more doctors in the US had discussed thyroid problems with their patients compared to their counterparts in India (p < 0.001). In both countries, only a very low percentage of physicians have recommended for thyroid blood test. US respondents were more aware of their family histories pertaining to thyroid problems than India. US respondents also have significantly more experience with other types of endocrine diseases. However, both countries expressed interest in getting a thyroid blood test.

We have further analyzed gender differences in each country specifically about symptoms of hypothyroidism with Question 13 (Table 2). [13] In children, what are the symptoms of hypothyroidism? (Check all that apply) Always tired; Reading problems; Anxious/nervous; Unable to complete homework; Disorganized; Too focused; Forgetfulness; (not sure) Table 2: Gender Difference vs Country

Country

Symptoms

Male (%)

Female (%)

P-value§

India

Difficulty Reading

107 (15.2)

108 (20.1)

0.02

 

Anxiousness

314 (44.5)

279 (52.0)

0.009

 

Disorganized

166 (23.5)

191 (35.6)

<0.001

US

Tiredness

136 (44.9)

491 (54.5)

0.004

 

Forgetfulness

85 (28.1)

313 (34.7)

0.03

  • Pearson’s Chi2 test for statistical analysis Table 2 shows low knowledge in both countries in both genders. We also assessed question 16 and created a score to quantitatively assess the public’s awareness about what a endocrinologist is (Table 3,4,5)

[16] What is an endocrinologist? (Check all that apply) Doctor that treats diabetes; Psychiatrist that treats obesity; Doctor that treats thyroid disease; Brain surgeon; Doctor that treats glandular disease; Unsure

 

FIGURE 5: Mean Q16 score vs Level of Education We had defined “Q16 score” as total number of correct responses to question 16 with a maximum score of 3 (Figure 5). Overall, Indian females knew more than US males, with the exception of the post-college group. This could be a cultural bias because there are fewer endocrinologists in India. Table 3: Comparison by Country (Q16)

 

US (n=1204)

 

India (n=1243)

Pearson’sχ² Coefficient

df

P-value§

High School

0.73 ± 0.08

0.64 ± 0.12

27.26

3

<0.001

College

1.12 ± 0.04

0.98 ± 0.03

103.33

3

<0.001

Post College

1.29 ± 0.04

0.78 ± 0.04

83.24

3

<0.001

All Education

1.17 ± 0.03

0.89 ± 0.02

140.70

3

<0.001

According to Table 3, US respondents in all education levels knew more about endocrinologists than India in general. Table 4: Comparison by Gender in US (Q16)

 

US Male

(n=303)

 

US Female (n=901)

Pearson’sχ² Coefficient

df

P-value§

High School

0.44 ±0.10

0.86 ± 0.10

6.70

3

0.082

College

0.74 ± 0.08

1.22 ± 0.05

22.58

3

<0.001

Post College

1.30 ± 0.07

1.28 ± 0.04

0.72

3

0.868

All Education

1.00 ± 0.05

 1.22 ± 0.03

16.09

3

0.001

According to Table 4, there was no significant difference in endocrinologist knowledge between US males and US females by education level except in the college group. Table 5: Comparison by Gender in India (Q16)

 

India Male (n=706)

 

India Female (n=537)

Pearson’sχ² Coefficient

df

P-value§

High School

0.38 ± 0.11

0.87 ± 0.19

15.00

3

0.002

College

0.87 ± 0.04

1.11 ± 0.04

45.98

3

Post College

0.67 ± 0.04

0.97 ± 0.06

19.66

3

All Education

0.77 ± 0.03

1.04 ± 0.03

64.31

3

  • Pearson’s Chi-square test for statistical analysis In general, Indian females knew more about endocrinologists compared to Indian males, in all education levels except for the high school group. Similarly, we had created “total knowledge score” based on the total number of correct responses to Questions 13, 16, 17, and 18 in order to quantitatively assess multiple correct answers. The maximum possible score is 11(Table 6, 7, 8). [13] In children, what are the symptoms of hypothyroidism? (Check all that apply) Always tired; Reading problems; Anxious/nervous; Unable to complete homework; Disorganized; Too focused; Forgetfulness; (not sure) [16] What is an endocrinologist? (Check all that apply) Doctor that treats diabetes; Psychiatrist that treats obesity; Doctor that treats thyroid disease; Brain surgeon; Doctor that treats glandular disease; Unsure [17] What is hypothyroidism? Overactive thyroid gland; Underactive thyroid gland; Cancer; Diabetes; Unsure [18] What is hyperthyroidism? Overactive thyroid gland; Underactive thyroid gland; Obesity; Heart disease; Unsure Table 6: Mean knowledge score Comparison by Country

 

US (n=1204)

 

India (n=1243)

Pearson’sχ² Coefficient

df

P-value§

High School

2.59 ± 0.20

2.52 ± 0.27

27.84

7

0.001

College

3.71 ± 0.10

3.42 ± 0.07

37.10

9

<0.001

Post College

4.28 ± 0.09

3.72 ± 0.11

32.97

10

0.001

All Education

3.90 ± 0.06

3.45 ± 0.06

51.21

10

<0.001

According to Table 6, the mean knowledge scores were significantly higher in the US for all education levels.  Especially in the college group, the US knowledge of hypothyroidism is statistically more significant than that of India. Table 7: Mean Knowledge Score Comparison by Gender in US

 

US Male (n=303)

 

US Female

(n=901)

Pearson’sχ² Coefficient

df

P-value§

High School

1.97 ± 0.37

2.87 ± 0.23

16.78

7

0.033

College

3.24 ± 0.21

3.85 ± 0.11

25.30

9

0.005

Post College

4.43 ± 0.19

4.22 ± 0.10

21.35

10

0.03

All Education

3.73 ± 0.14

3.96 ± 0.07

28.22

10

0.003

US female knows more than US male, overall, but no significant difference could be found in this group (Table 7).

Table 8: Mean Knowledge Score Comparison by Gender in India

 

India Male (n=706)

 

India Female (n=537)

Pearson’sχ² Coefficient

df

P-value§

High School

2.15 ± 0.24

2.83 ± 0.46

21.04

7

0.004

College

3.14 ± 0.10

3.76 ± 0.10

73.79

9

<0.001

Post College

3.34 ± 0.14

4.35 ± 0.18

32.83

10

0.001

All Education

3.16 ± 0.08

3.84 ± 0.09

85.95

10

<0.001

Indian female has significantly higher knowledge score than male in all education level (Table 8).

FIGURE 6: Mean knowledge score vs. Level of Education Even if the possible max score is 11, most groups scored less than 1/3 of possible correct answers in knowledge score (Figure 6). Overall, females had higher knowledge scores than male (p value). In post-college group, US males had the highest mean knowledge scores, exceptionally. Discussion The Internet, while popular, has limitations to assess world-wide public awareness. The age range of participants are narrow (20’s to 50’s) and thus the selection bias is unavoidable25. Initially, we did not optimize this survey by country but as we collected data, we realized that China was heavily blocked24 and not many responses were received from Europe, South America, or Africa. Possibly, due to the limited age range, a socio-economic bias caused from computer accessibility, and self-selection of participants25, which can occur in any internet survey. Hence, we probably did not receive respondents from rural areas where hypothyroidism might be undiagnosed because of the limited Internet access. Also, in order to participate in research, respondents had to be an English-literate and had to have enough interest in the topic in order for them to participate. This would have limited respondents to have a college or post-college education, as many nations whose first language was not English would have taught English at the tertiary education level. It would be interesting to get more respondents in the high school or less education group to better assess their knowledge. However, our short-term Internet survey was inexpensive and we could economically use our time and labor resources. We spent a minimal amount on advertising on Facebook. Also, there was quick feedback time, which allowed us to get instant answers. Using the Internet, surveys have a potential power to reach tens and hundreds of thousands of respondents28,29. We also believe the Internet users, who are educated and young yields future potential for health literacy research. In our survey, another limiting factor was that we could not match age demographics in each country. More young Indians (20’s-30’s) answered compared to the US. Also, we were only able to get small responses in high school or less education group in both counties. In the US, we have received significantly more responses from females than from males, while in India, the reverse was true. We believe the gender bias may be due to cultural differences: more women answered in US because perhaps traditionally women seek healthcare more than men in US, and women are in charge of finding healthcare for their families26. In India, a more traditional patriarchal society, perhaps men are more in charge of this type of health information27. Additionally, we could have organized our questionnaires so that the number of questionnaires was fewer and required single choice responses. This may have prevented more respondents from completing questionnaires. In our survey, we respected privacy of the survey and no name was collected. We obtained informed consent but we did not go through a formal Institutional Review Board (IRB) process. Conclusion This Internet survey study showed that with limited resources, a global community would respond to a health questionnaire.  The accessibility of social media sites such as Facebook— allowed the authors to obtain data from US, India and other countries with relative ease. Despite the relative low level of interest of hypothyroidism on Internet Search engines such as Google Trends, we were able to obtain more than 2400 responses to a questionnaire. The study showed that despite the high level of education of the survey participants, health literacy in hypothyroidism is low globally. This is surprising since most respondents had college education.  There is higher hypothyroid prevalence reported in India compared to the US. However, the awareness level in India is not higher than the US, according to our study.   The low level of awareness of hypothyroidism may be related to a lower profile Internet profile or 8.7 million websites versus Diabetes with 219 million websites30. In our questionnaire, correct answers about hypothyroidism ranged from 15 to 54% for some questions, suggesting limited knowledge about the disease. The definition of “Endocrinologist” elicited low numbers of correct answers in both the US and India. In our sample, more female from US and India answered correctly, correlating to female preponderance of hypothyroidism. The Internet presence of websites containing the term “Endocrinologist” was 5 million websites30 where popular search terms such as “plastic surgery” has 140 million websites30, “beauty” which has 1.9 trillion websites30. From our study, we suggest Internet surveys and social media can be a good tool in the assessment and education of global health literacy.  In the future, physicians may want to consider using the Internet to explore ways to reach the public for health education purposes. Reference

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