International Thyroid Cancer
Patient Survey
Revised July 2010
Prepared for:
Kate Farnell, Thyroid Cancer Alliance
Prepared by:
Jamie Margerison, Alastair McDougall,
Holden Pearmain Research
ACTIRA
Contents
Executive Summary
2. Background & Research Objectives
3. Sample & Methodology
4. Diagnosis of Thyroid Cancer
5. Patient Support at Diagnosis
6. Surgery
7. RAI Treatment
8. Thyrogen V Withdrawal
9. Follow-Up Regime
10. Assessment of Cancer Journey
1.
2
1
Executive Summary
Executive Summary (1)
The stage of diagnosis was the most difficult time for patients
Being diagnosed with cancer (24%) and the resulting anxiety about the
future (22%) were the most difficult aspects of the cancer journey for
patients
Referral to a specialist could be slower than expected
28% of patients had to wait more than 4 weeks before seeing a specialist
Establishing the diagnosis could be difficult
18% waited more than 4 weeks from seeing the specialist before receiving
a diagnosis
64% of patients required surgery to achieve a diagnosis
Information and psychological support at diagnosis were often
lacking
77% of respondents were not offered support from a nurse or similar
person
93% were not offered psychological support
84% were not given details of a patient support organisation
63% were not given clear written information about their disease and its
treatment
4
Executive Summary (2)
Repeat neck surgery was a common experience
46% of patients had undergone two or more operations on their neck
Post-surgery complications were relatively common
39% of respondents experienced low blood calcium levels and 36% voice
problems following surgery
Thyroid hormone withdrawal was widely used and often symptomatic
81% of respondents stopped taking all hormone therapy
87% experienced one of more symptoms of hypothyroidism
Thyrogen was offered as an option to a minority of patients and was
associated with fewer side effects than hormone withdrawal
37% of patients were offered Thyrogen
22% experienced side effects
87% of those who had experienced both Thyrogen and hormone
withdrawal preferred Thyrogen
5
Executive Summary (3)
RAI treatment was widely used and side effects were common
84% had undergone RAI
80% experienced one or more side effects
41% sought the help of their family doctor around the time of treatment
Administration of the first RAI treatment could be delayed
28% of patients had their first treatment more than two months after
surgery (median of 3 months in France, Germany and the UK; 4 months in
the US and Canada; 6 months in Italy)
Outpatient RAI treatment was more common in N. America than in
Europe
62% of US patients and 32% of Canadian patients were treated on an
outpatient basis, versus 3% in Germany and the UK and 7% in France
Access to clinical trials/’off-label’ drugs was more common in the UK
than other countries
5% of patients had access in the UK, versus 3% in France, Germany and
the US
6
Executive Summary (4)
Areas for Improvement:
For a minority of patients, speed of referral to a specialist could be
improved
There was a clear need for better information and psychological
support at the time of diagnosis
Ensuring that thyroid surgery was only carried out by specialist
thyroid cancer surgeons would help reduce the level of post-surgical
complications
Prolonged calcium supplementation may be reduced by adopting the
withdrawal programme protocol currently in place at NCCC
Newcastle, UK
Offering Thyrogen to more patients would reduce the proportion of
patients experiencing side effects from thyroid hormone withdrawal
For a minority of patients, delays in receiving RAI after surgery could
be addressed
Access to clinical trials/’off-label’ drugs could be broadened
7
2
Background & Research
Objectives
Project Background
The Thyroid Cancer Alliance are a group of Thyroid Cancer Patient support
organisations from USA, Canada, South America and Europe who have joined
together in a number of projects to improve awareness of Thyroid Cancer
globally.
Their hard work takes many forms, however part of their work includes
undertaking a Thyroid Cancer Experience Questionnaire. This questionnaire
will be a ground breaking piece of work for the Alliance as it will be the first
time a questionnaire of this scale has gone out to so many patients.
The aim of this project is for the Alliance to be able to use the presentation at
the International Thyroid Cancer Congress, that is to be held in September
2010 in Paris.
Due to the very busy schedules of the Alliance members, they are looking to
partner with a market research agency to conduct all of the fieldwork,
analysis and preparation of the presentation for this very important piece of
work.
9
Project Objectives
This ground breaking survey will enable the Alliance to learn so much
more about the different experiences of Thyroid Cancer across the
globe.
The questionnaire will focus on four main areas:
Assess the life impact of a Thyroid Cancer diagnosis from a wide breadth
of patients. [All Thyroid Cancer Types]
Identify differences in treatment protocols worldwide
Identify areas for improvement
Produce an innovative key document for clinicians and patients, present
this at an International Thyroid Cancer Conference in Paris 2010
10
3
Research Design:
Methodology, Sample and
Fieldwork
Methodology
How?
Sample & Recruitment Criteria
Quantitative
Sample
 Survey conducted via the
Internet (plus face-to-face
interviews in the UK)
 Argentina
 Using Thyroid Cancer Alliance
websites
 10-minute interview length
 Fieldwork conducted in March
 Canada
 France
 Germany
 UK
 USA
Recruitment Criteria
 Thyroid Cancer patients
12
4
Diagnosis of Thyroid Cancer
Patient Profiles
38% of patients
came from the US
Argentina
13%
2%
Canada
11%
9%
France
Germany
Italy
9 out of 10 patients were female
21%
2%
UK
12%
87%
38%
US
Other
Male
5%
Female
Q2 Are you…
Q1 Which country do you live in?
Base: All respondents
(N=2,398)
14
Genetic Profile
Just over 1 in 10 patients reported
a family history of Thyroid Cancer
7%
13%
Papillary (1558)
13%
Follicular (209)
13%
Mixed (281)
Hurthle Cell (40)
12%
8%
Medullary (105)
80%
Yes
No
Anaplastic (11)
15%
9%
Don't know
% with family history by cancer type
* Excludes 194 patients with other/don’t know cancers
Q3 Do you have a family history of Thyroid Cancer?
Base: All respondents
(N=2,398)
15
Genetic Profile
Just over 1 in 10 patients with a family history have had
genetic testing
Yourself
83%
13%
Papillary (196)
7%
Follicular (27)
7%
4%
Mixed (33)
Family
member
76%
14%
10%
12%
Hurthle Cell (3) 0%
Medullary (16)
Yes
No
Don't know
88%
Anaplastic (1) 0%
% having had genetic testing by cancer type
* Excludes 31 patients with other/don’t know cancers
Q3a Have you had any genetic testing done for
thyroid cancer?
Q3b Has one or more of your blood relatives had
genetic testing done for thyroid cancer?
Base: All with a family history of thyroid
cancer (N=307)
N.B. Low Bases
16
History of Diagnosis
The average age at diagnosis
was 38.4 years
Patients were diagnosed on
average 5.1 years ago
32%
16%
29%
25%
18%
15%
5%
4%
55%
1%
Under 19
20-29
30-39
40-49
50-59
60-69
70+
<1year
1-5 years
>5 years
Patient age at diagnosis
(years)
Q4 How old were you when you were diagnosed with Thyroid Cancer?
Q5 How long is it since your diagnosis of Thyroid Cancer?
Base: All respondents
(N=2,398)
17
Waiting Time to Consultation
One third of patients had to wait less
than 2 weeks to see a specialist
8% waited more than 3 months to
see a specialist
9%
I was seen immediately
Range
(months)
Median
(months)
Canada (42)
5.0
31%
Less than 2 weeks
France (26)
2 weeks – 4 weeks
30%
Over 4 weeks – 3 months
20%
8%
More than 3 months
Germany (9)
6.5
5.0
UK (31)
4 - 48
4 - 15
Spain (5)
US (56)
Don’t know
4 - 24
7.0
4 - 36
6.0
4 - 11
6.0
4 - 36
4%
* Excludes 12 patients from other countries
Q7 How long did you wait to be seen by a thyroid specialist once you were
referred?
Base: All respondents
(N=2,398)
Q7a If you had to wait more than 3 months, please
N.B. Low Bases
would you say exactly how long you waited?
Base: All who had to wait more than 3 months
(N=181)
18
Initial Consultation
An endocrinologist was the first
specialist seen for over a third of
patients
39% of patients noticed a lump
themselves
Routine check-up
25%
Difficulty swallowing
34%
Head & Neck Surgeon
19%
Surgeon (general)
19%
15%
Imaging test for
other reason
12%
Nuclear Medicine
Specialist
11%
Endocrine Surgeon
Family member
noticed lump
9%
Hoarse voice
9%
Difficulty breathing
Endocrinologist
39%
Noticed a lump
Oncologist
Vascular Surgeon
7%
Q6 What led you to see your Doctor initially?
Other
6%
2%
1%
9%
Q8 Who was the first Thyroid Specialist that you saw when you were
suspected of having Thyroid Cancer?
Base: All respondents
(N=2,398)
19
Time to Diagnosis
Just over half of patients waited
less than 2 weeks before being
diagnosed
18% waited more than 4 weeks
Range
(weeks)
Median
(weeks)
Less than 2 weeks
52%
Canada (88)
2 weeks – 4 weeks
25%
France (64)
Germany (32)
8.0
6.0
5 - 52
5 - 30
5 - 30
18%
More than 4 weeks
Don’t know
9.0
5%
UK (73)
8.0
5 - 60
US (149)
8.0
5 - 64
* Excludes 30 patients from other countries
Q11 How long did you wait from seeing your specialist to getting your
diagnosis?
Base: All respondents
(N=2,398)
Q11a Please would you say exactly how long you waited?
Base: All respondents waiting more
than 4 weeks for diagnosis (N=436)
20
Diagnostic Tests
80% of patients reported having
had a neck ultrasound
80%
Neck Ultrasound
51%
Physical Exam
Thyroid hormone
suppression blood test
Other
34%
23%
14%
CT/CAT scan
PET scan
2%
72%
Fine needle aspiration
MRI
Two-thirds of patients reported
having had surgery to gain their
diagnosis
64%
6%
3%
Yes
20%
Q9 Which tests did you have done to evaluate your thyroid lump before you
were diagnosed with thyroid cancer?
Base: All respondents
(N=2,398)
No
Don't know
Q10 Did you have surgery to gain your diagnosis?
21
Communication of Diagnosis
Two-thirds of patients were told
they had cancer by a thyroid
cancer specialist
Thyroid Cancer
Specialist
Two-thirds of patients were given
their diagnosis in person
69%
Family doctor
11%
In person at hospital
In person at doctor’s office
My doctor’s
assistant
1%
By a telephone call
Nurse
1%
By a letter
Other
41%
Other
15%
Q12 Who told you that you had thyroid cancer?
29%
26%
1%
4%
Q13 How was the diagnosis given?
Base: All respondents
(N=2,398)
22
Histology
Two-thirds of patients reported being
diagnosed with papillary thyroid cancer
65%
Papillary
Mix papillary/ follicular types
Follicular
Medullary
Hurthle Cell
Of those with medullary thyroid
cancer, a quarter stated it was
familial
7%
24%
12%
9%
4%
2%
Anaplastic
Other
Don’t know
69%
3%
5%
Q14 What type of thyroid cancer were you diagnosed with?
Base: All respondents
(N=2,398)
Yes
No
Don't know
Q14a Was this a familial/ genetic type?
Base: (N=105)
23
5
Patient Support at Diagnosis
Support at Diagnosis
Three-quarters of patients were not
offered additional support from a
nurse or other support person
93% stated they were not offered
psychological support
1% 6%
3%
20%
77%
Yes
No
93%
Don't know
Yes
Q15 Were you offered any additional support at the stage of diagnosis from a
specialist oncology/cancer nurse or other support person?
No
Don't know
Q17 Were you offered psychological support from a psychologist/
counsellor at the stage of diagnosis?
Base: All respondents
(N=2,398)
25
Information at Diagnosis
Over 4 in 5 patients were not given
details of a patient support
organisation
2%
Almost two-thirds of patients were not
given clear written information about
their disease and its treatment
2%
14%
35%
63%
84%
Yes
No
Don't know
Yes
Q16 Were you given details of a patient support organisation’s details at the
stage of diagnosis?
No
Don't know
Q18 At the time of diagnosis were you given clear written information about
your disease and its treatment?
Base: All respondents
(N=2,398)
26
Sources of Information/Support
Most patients sought information on
their condition from outside sources
9 in 10 sought information from the
internet; half said it was the most widely
used source
Most useful
14%
88%
Internet
Pamphlets
86%
Yes
No
7%
Patient Support Orgs.
31%
12%
Books
30%
5%
Family doctor
28%
5%
Other patients
28%
8%
26%
Family/ friends
Complementary therapy
Other
Q19 Did you seek information/support from outside the hospital clinic at any
point after you were diagnosed?
Base: All respondents
(N=2,398)
42%
49%
7%
11%
3%
1%
7%
Q19a Please could you say where you sought information or support?
Q19b Which of these information sources did you find most beneficial
to you personally?
Base: All respondents who
sought information
(N=2,047)
27
6
Surgery
Surgery and Complications
Just over half of patients had undergone
one surgical procedure on their neck
1
39% of patients experienced low blood
calcium levels, and 36% experienced voice
problems following surgery
Low blood calcium levels
54%
39%
36%
Voice problems
2
3
38%
Numbness
29%
Restricted neck/
shoulder movement
5%
27%
11%
Vocal cord palsy
4
1%
Infection
Other
5
1%
No complications
Q20 How many neck surgeries have you had for thyroid cancer?
3%
17%
27%
Q21 Please could you indicate if you experienced any of the following post
surgery complications?
Base: All respondents
(N=2,398)
29
Resolution of Complications
42% of patients stated that
all their complications had now been
resolved
Low blood calcium levels had yet to
be resolved for one third of patients
32%
Low blood calcium levels
29%
Numbness
31%
Voice problems
31%
42%
Restricted neck/
shoulder movement
24%
Vocal cord palsy
29%
Yes, all have been resolved
Yes, most have been resolved
No
Q22 Have these post surgery complications now been resolved?
Base: All who experienced post surgery
complications (N=1,743)
Infection
Other
12%
1%
22%
Q22a Which of your post surgery complications have not been resolved yet?
Base: All whose post surgery complications
had not yet been resolved (N=1,010)
30
7
RAI Treatment
Radioactive Iodine Treatment
84% of patients had undergone radioactive iodine treatment.
More than half had received one treatment.
Papillary (1558)
16%
88%
Follicular (209)
Mixed (281)
90%
Hurthle Cell (40)
89%
Medullary (105)
84%
92%
9%
Anaplastic (11)
82%
% who have had RAI by cancer type
Yes
No
Q23 Have you had radioactive iodine treatment?
Base: All respondents
(N=2,398)
*excludes 194 patients with other/don’t know cancers
57% underwent 1 treatment
27% underwent 2 treatments
9% underwent 3 treatments
Remainder underwent 4-15 treatments
Q24 How many radioactive iodine treatments have you had?
Base: All who had radioactive iodine
treatment (N=2,011)
32
Time to RAI Treatment
Almost half of patients had their first
RAI treatment 1-2 months after surgery
Over a quarter had their first RAI treatment
more than 2 months after surgery
Range
(months)
Median
(months)
One month or less
22%
Between one and
two months
More than two months
Canada (131)
48%
28%
Don’t know 2%
4.0
3 - 24
France (58)
3.0
3 - 10
Germany (39)
3.0
3 - 60
Italy (24)
UK (85)
US (218)
6.0
3.0
3 - 24
3 - 24
4.0
3 - 84
*excludes 21 patients from other countries
Q25 How long after surgery did you have your first
radioactive iodine treatment?
Base: All who had radioactive iodine
treatment (N=2,011)
Q25a Please would you say how long it was before you had radioactive iodine
treatment after your first thyroid cancer surgery?
Base: All who waited more than two
months (N=576)
33
Preparation for RAI Treatment
81% of patients stopped taking all thyroid hormone
replacement therapy
Patients stopped taking thyroid
hormone replacement for on
avg. 4.1 weeks prior to RAI
19%
Less than 1 year
(271)
65%
1 – 5 years
(1140)
81%
Yes
78%
More than 5 years
(600)
No
Q26 Did you stop taking all thyroid hormone replacement in
preparation for your radioactive iodine treatment?
93%
% stopping all replacement therapy
by time since diagnosis
Q26a Please would you say how many weeks you stopped taking all thyroid
hormone replacement?
Base: All who had radioactive iodine
treatment
(N=2,011)
34
Thyroid Hormone Withdrawal
87% of patients experienced one or more symptoms of
hypothyroidism when thyroid hormone replacement was stopped
80%
Tiredness
61%
Inability to concentrate
Feeling cold
54%
Weight gain
49%
Depression
44%
Constipation
Prolonged headache
No symptoms
34%
20%
13%
Q27 Did you experience any symptoms of hypothyroidism when you stopped
thyroid hormone replacement?
Base: All who had radioactive
iodine treatment
(N=2,011)
35
Side Effects of RAI Treatment
80% of patients who underwent radioactive iodine treatment
experienced one or more side effects
Taste disturbance
43%
Dry mouth
43%
34%
Salivary/ parotid gland swelling /pain
31%
Nausea/ vomiting
24%
Sore neck
Changes in menstrual cycle (women only)
15%
Skin problems
15%
Stomach pain
Dry eyes
No side effects
13%
12%
20%
Q28 Did you experience any side effects immediately following RAI treatment?
Base: All who had radioactive
iodine treatment
(N=2,011)
36
Administration of RAI
Two-thirds of patients received RAI
as an inpatient
On average, one third
received RAI as an outpatient
Overall (1,976)
31%
Canada (226)
32%
31%
France (177)
7%
Germany (425) 3%
Italy (37) 0%
69%
UK (235) 3%
US (772)
Inpatient
Outpatient
62%
*excludes countries with <37 patients
Q29 Was your treatment given…?
In Argentina (35) 91% of patients
received RAI as an outpatient
Base: All who had radioactive iodine treatment
(excluding Argentina)
37
RAI Treatment Facilities
62% of patients judged the treatment facilities as good or very good
Very Good
30%
32%
29%
6%
3%
Very Poor
Q30 How did you find the facilities in the room where your treatment was given?
Base: All who had radioactive iodine treatment
(N=2,011)
38
Radioactive Iodine Treatment
41% of patients sought the help of their family doctor, with 22% requiring
antidepressants and/or sleeping tablets
22%
41%
59%
78%
Yes
No
Q31 Did you seek help from your family doctor physician during the
period before and/or after treatment?
Base: All who had radioactive iodine treatment
(N=2,011)
Yes
No
Q32 Did you require antidepressants and/ or sleeping tablets during this time?
Base: All who had radioactive iodine
treatment (N=2,011)
39
Recovery after RAI Treatment
Two-thirds of patients were able to return to normal activities
within 3 months
38%
Less than 1 month
1-3 months
30%
12%
4-6 months
More than 6 months
10%
Not returned to normal
range of activities
Don’t know
8%
2%
Q36 How long after radioactive iodine treatment did you feel able to
return to your normal range of activities?
Base: All who had radioactive iodine treatment
(N=2,011)
40
8
Thyrogen V Withdrawal
Treatment with rhTSH (Thyrogen)
37% of patients were offered Thyrogen
instead of withdrawal
Less than 1 year
(271)
41%
37%
1 – 5 years
(1,140)
42%
63%
More than 5 years
(600)
Yes
27%
No
% offered Thyrogen by time since diagnosis
Q33 Did your Thyroid Specialist offer rhTSH (Thyrogen) instead of
withdrawal from thyroid hormone?
Base: All who had radioactive iodine treatment
(N=2,011)
42
Treatment with rhTSH (Thyrogen)
Over 9 in 10 of those who were offered
Thyrogen said that the option was
explained to them
9%
91%
Yes
No
Q33a Was the option of rhTSH (Thyrogen) explained to you?
Base: All who were offered Thyrogen (N=752)
43
Treatment with rhTSH (Thyrogen)
22% of patients who had Thyrogen
experienced side effects
58% reported experiencing fatigue and
53% reported a headache
Fatigue
22%
58%
Headache
53%
43%
Nausea/ vomiting
Dizziness
78%
Redness, pain, discoloration, hardness
Other
Yes
No
Q34 If you had rhTSH (Thyrogen) did you experience any side effects?
Base: All who had rhTSH (Thyrogen) (N=995)
33%
10%
24%
Q34a Please could you say what these side effects were?
Base: All who experienced side effects
(N=221)
44
Treatment with rhTSH (Thyrogen)
87% of those who had experienced both Thyrogen
and withdrawal preferred Thyrogen
3%
11%
87%
Thyrogen
Withdrawal
Neither
Q35 If you have experienced both rhTSH (Thyrogen) and withdrawal,
please could you say which you preferred?
Base: All who experienced both rhTSH (Thyrogen)
and withdrawal (N=915)
45
Treatment with rhTSH (Thyrogen)
Just under 1 in 10 patients had to pay for Thyrogen themselves
17%
Canada (126)
Private Medical Insurance
46%
France (93) 0%
NHS/ Public Health Insurance
Self funded
46%
7%
Germany (234)
2%
UK (109)
2%
US (359)
12%
% self-funded by country
*excludes 74 patients from other countries
Q34b Please could you say who covered the costs for your treatment
with Thyrogen?
Base: All who received rhTSH (Thyrogen)
(N=995)
46
Treatment with rhTSH (Thyrogen)
Just under a half of those who paid for Thryogen
themselves were placed under financial difficulty
47%
53%
Yes
No
Q34c Did this place you and/ or your family under financial difficulty?
Base: All who had to pay for Thyrogen themselves (N=73)
47
9
Follow-Up Regime
Current Treatment
84% of patients were
currently on T4 replacement
T4 (e.g. Levothyroxine,
Synthoid)
54% of patients were currently under the
care of an endocrinologist
54%
Endocrinologist
84%
Nuclear Physician
Mixed regime of T3 and T4
9%
11%
Oncologist
Doctor (not a specialist)
T3 (e.g. Cytomel) 1%
14%
Head and Neck Surgeon
9%
3%
Endocrine surgeon 2%
Other
6%
Other
Q37 What is your current replacement hormone regime?
6%
Q38 Who is currently responsible for your care?
Base: All respondents
(N=2,398)
49
Treatment Centre
A quarter of patients had changed
hospitals/centres
24%
Moved house
28%
Dissatisfied with care
21%
Needed more specialised
care
To access RAI/thyrogen
Convenience/closer to home
Insurance reasons
76%
To stay with same doctor
Yes
No
For operation
Other
16%
8%
5%
4%
3%
2%
11%
Q38b If you have changed hospitals/centres, please could you indicate
the reason for this?
Base: All respondents
(N=2,398)
Base: All who changed
hospitals/centres (N=575)
50
Disease Status
57% of patients reported they were
currently disease-free
Less than 1 year
(394)
34%
1 – 5 years
(1318)
62%
23%
More than 5 years
(686)
64%
% disease-free by time since diagnosis
57%
20%
Papillary (1558)
59%
Follicular (209)
58%
62%
Mixed (281)
Yes
No
Don't Know
Hurthle Cell (40)
Medullary (105)
Q39 Are you currently disease free?
Base: All respondents
(N=2,398)
Anaplastic (11)
55%
28%
18%
% disease-free by cancer type
*excludes 194 patients with other/don’t know cancers
51
Disease Status
14% of patients had
metastatic disease
14%
15%
Observation was the
commonest method of
management
Observation
56%
Radioactive Iodine
38%
Surgery
36%
Radiotherapy
71%
Yes
No
Don't Know
Q40 Do you have any metastatic disease outside the neck?
Base: All respondents
(N=2,398)
15%
Chemotherapy
5%
Palliative Support
4%
Other
20%
Q40a How is this being managed?
Base: All with metastatic
disease (N=338)
52
10
Assessment of Cancer
Journey
Assessment of Cancer Journey
Receiving a cancer diagnosis and
uncertainty/anxiety about the future were
the most difficult aspects for one fifth of
patients
24%
Receiving a cancer diagnosis
Uncertainty/anxiety about the
future
22%
Side effects of treatment
11%
Lack of psychological/
emotional support
8%
Negative changes in lifestyle
8%
Lack of information
8%
Financial/ career worries
Effect on relationships
3%
2%
Q42 Overall what would you say was the most difficult aspect of your
cancer journey?
Just under half of patients stated that more
information about their disease could have
improved their cancer journey
More information about
disease
Introduction to patient support
groups
Psychological support
Clear information about
treatment options
Introduction to a fellow
patient
Quicker access to test
results
Access to a specialist/
oncology nurse
Easier access to cancer care
teams
Other
45%
43%
43%
34%
27%
24%
17%
16%
22%
Q43 What, if anything, could your medical team have done to improve this?
Base: All respondents
(N=2,398)
54