Thyroid Cancer Patients’ Survey – UK Data

Thyroid Cancer Patients¡¯ Survey ¨C UK Data

Executive Summary

Most respondents sought help because they had noticed a lump or swelling in

their neck

The majority of respondents were not seen by a thyroid specialist when they

were suspected of having thyroid cancer

Less than half respondents said that they had been offered additional support

at the stage of diagnosis, that they had been given details of a patient support

organisation or that they had received clear written information about their

condition and its treatment

Over three quarters of respondents sought information from sources outside

the hospital. The internet and patient support organisations appeared to be

the most helpful sources

Voice problems and low blood calcium levels were each experienced by

almost half the respondents after surgery

Radioactive iodine treatment normally occurred between one and two months

after surgery

Over half respondents experienced tiredness as a result of hypothyroidism

Taste disturbance and dry mouth were each experienced by approximately

one third of respondents after radioactive iodine treatment

A minority of respondents were offered thyrogen, but almost all who took it

had it paid for by the NHS

Side effects were much less common from thyrogen than from withdrawal

Among those who had both withdrawal and thyrogen, there was an

overwhelming preference for thyrogen

Respondents who took thyrogen were more likely to return to their normal

range of activities within one month of radioactive iodine treatment

Receiving a cancer diagnosis was the most frequently identified ¡®worst point¡¯

of the cancer journey

More information about the disease, psychological support, introduction to

patient support groups and quicker access to test results were all identified by

approximately one third of respondents as steps that would have improved

their cancer journey

More recently diagnosed patients were more likely to have been provided with

clear written information about their disease, specialist support and

information about patient support organisations

Diagnosis

Of 276 patients responding to the survey, 58 (21.0%) were male and 218

(79.0%) were female. 28 (10.1%) had a family history of thyroid cancer. 7

(2.5%) had had genetic testing for thyroid cancer and 6 (2.2%) had blood

relatives who had had such testing.

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The chart below shows that most people were aged 30-60 when they were

diagnosed with thyroid cancer:

Chart 1: Age at Diagnosis of Thyroid Cancer

The table below shows that the majority of respondents were completing the

questionnaire 1-5 years after they had been diagnosed:

Table 1: Length of Time Since Diagnosis of Thyroid cancer

Length of time

Less than 1 year

1-5 years

More than 5 years

Total

Frequency Percent

28

10.1

160

58.0

88

31.9

276

100.0

Respondents were asked why they had approached their doctor initially and gave

the following responses (more than one response could be given):

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Table 2: Reason for Approaching Doctor

Reason for approaching doctor

Frequency (%)

Noticed lump or swelling in neck

Family member noticed lump or swelling in neck

Difficulty swallowing

Hoarse voice

Difficulty breathing

Imaging check for another reason

Check up (family history or routine)

Other

194 (70.3%)

51 (18.5%)

49 (17.8%)

30 (10.9%)

23 (8.3%)

15 (5.4%)

9 (3.3%)

40 (14.5%)

As the table below shows, just over one half of respondents were seen by a

specialist within four weeks of referral:

Table 3: Length of Time Waiting to See a Specialist Once Referred

Length of time

Less than 2 weeks

2 weeks - 4 weeks

4 weeks - 3 months

More than 3 months

I was seen immediately

Don¡¯t know

Total

Frequency Percent

52

18.8

94

34.1

86

31.2

31

11.2

4

1.4

9

3.3

276

100.0

However, in the majority of cases, the first specialist seen was not a thyroid

cancer specialist, as is shown below:

Table 4: First Specialist Seen

Specialist

Surgeon (general)

Endocrinologist

Endocrine Surgeon

Head and Neck Surgeon

Vascular Surgeon

Oncologist

Other

Total

Frequency Percent

116

42.0

36

13.0

43

15.6

54

19.6

4

1.4

6

2.2

17

6.2

276

100.0

The table below indicates that the majority of respondents were diagnosed within

four weeks of seeing a specialist:

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Table 5: Time Between Getting Diagnosis and Seeing Specialist

Length of time

Less than 2 weeks

2 weeks - 4 weeks

More than 4 weeks

Don¡¯t know

Total

Frequency Percent

86

31.2

106

38.4

73

26.4

11

4.0

276

100.0

A small majority of respondents (141 or 51.1%) said that they had been given the

diagnosis by a thyroid cancer specialist, rather than another health professional.

However, there was some ambiguity in the responses to this question: 119

(43.1%) answered ¡®other¡¯, with common answers being endocrinologist, ENT

surgeons and surgeons. The large majority of respondents, 240 or 87%, were

told of the diagnosis in person at the hospital.

The most common diagnosis was papillary thyroid cancer, as is shown below:

Table 6: Type of Thyroid Cancer Diagnosed

Type

Papillary

Follicular

Mix papillary/follicular

types of thyroid cancer

Medullary

Hurthle Cell

Frequency Percent

144

52.2

41

14.9

21

7.6

Anaplastic

Don¡¯t know

Other

Total

17

9

6.2

3.3

5

31

8

276

1.8

11.2

2.9

100.0

Patient Support at Diagnosis

105 of the 276 respondents (38%) were offered additional support at the stage of

diagnosis from a specialist. 88 (31.9%) were given details of a patient support

organisation. 121 (43.8%) received clear written information about their condition

and its treatment.

216 respondents (78.3%) sought information from outside the hospital clinic. The

outside sources that were consulted are listed below (more than one could be

chosen by each respondent), together with the numbers saying that the source

was most helpful:

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Table 7: Source of Information and Support Used And Their Helpfulness

Source of information

Number / per cent

Number / per

cent saying most

helpful

Internet

Pamphlets from thyroid cancer organisations

Patient support organizations

Books about thyroid cancer

Family doctor

Family and friends

Other patients / survivors

Complementary therapy

Other

172 (62.3%)

99 (35.9%)

63 (22.8%)

60 (21.7%)

55 (19.9%)

52 (18.8%)

46 (16.7%)

14 ( 5.1%)

21 ( 7.6%)

87 (31.5%)

30 (10.9%)

34 (12.3%)

7 (2.5%)

13 (4.7%)

7 (2.5%)

17 (6.2%)

0

13 (4.7%)

This suggests that the most helpful forms of additional information were the

internet and patient support organisations. Moderately helpful information

sources were pamphlets produced by thyroid cancer orgainsations and other

patients / survivors. Unhelpful sources were the family doctor, books, family and

friends and complementary therapies.

Surgery

Almost all respondents had experienced neck surgery, with a little more than half

having had two surgical procedures, as is shown in the table below:

Table 8: Number of Neck Surgeries for Thyroid Cancer

Number of

Surgeries

0

1

2

3

4

5

Total

Frequency Percent

3

1.1

98

35.5

148

53.6

19

6.9

7

2.5

1

.4

276

100.0

65 respondents (23.6%) did not experience any post surgery complications. The

frequency with which specific complications occurred is shown in the table below:

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