View
42
Download
0
Category
Preview:
DESCRIPTION
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 Background & Research Objectives Sample & Methodology - PowerPoint PPT Presentation
Citation preview
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
2
Contents
1. Executive Summary2. Background & Research Objectives3. Sample & Methodology4. Diagnosis of Thyroid Cancer5. Patient Support at Diagnosis6. Surgery7. RAI Treatment8. Thyrogen V Withdrawal9. Follow-Up Regime10.Assessment of Cancer Journey
Executive Summary1
4
Executive Summary (1)
The stage of diagnosis was the most difficult time for patientsBeing 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 expected28% of patients had to wait more than 4 weeks before seeing a specialist
Establishing the diagnosis could be difficult18% waited more than 4 weeks from seeing the specialist before receiving a diagnosis64% 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 person93% were not offered psychological support 84% were not given details of a patient support organisation63% were not given clear written information about their disease and its treatment
5
Executive Summary (2)
Repeat neck surgery was a common experience46% of patients had undergone two or more operations on their neck
Post-surgery complications were relatively common39% 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 therapy87% 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 effects87% of those who had experienced both Thyrogen and hormone withdrawal preferred Thyrogen
6
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 delayed28% 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
7
Executive Summary (4)
Areas for Improvement:For a minority of patients, speed of referral to a specialist could be improvedThere was a clear need for better information and psychological support at the time of diagnosisEnsuring that thyroid surgery was only carried out by specialist thyroid cancer surgeons would help reduce the level of post-surgical complicationsProlonged calcium supplementation may be reduced by adopting the withdrawal programme protocol currently in place at NCCC Newcastle, UKOffering Thyrogen to more patients would reduce the proportion of patients experiencing side effects from thyroid hormone withdrawalFor a minority of patients, delays in receiving RAI after surgery could be addressedAccess to clinical trials/’off-label’ drugs could be broadened
Background & Research Objectives
2
9
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.
10
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 worldwideIdentify areas for improvementProduce an innovative key document for clinicians and patients, present this at an International Thyroid Cancer Conference in Paris 2010
Research Design: Methodology, Sample and Fieldwork
3
12
Methodology
How?
Quantitative
Survey conducted via the Internet (plus face-to-face interviews in the UK)
Using Thyroid Cancer Alliance websites
10-minute interview length
Fieldwork conducted in March
Sample & Recruitment Criteria
Sample
Argentina
Canada
France
Germany
UK
USA
Recruitment Criteria
Thyroid Cancer patients
Diagnosis of Thyroid Cancer
4
14
Patient Profiles
38% of patients came from the US
9 out of 10 patients were female
Q1 Which country do you live in? Q2 Are you…
Base: All respondents (N=2,398)Base: All respondents
(N=2,398)
5%
38%
12%
2%
21%
9%
11%
2%
Other
US
UK
Italy
Germany
France
Canada
Argentina
15
Genetic Profile
Just over 1 in 10 patients reported a family history of Thyroid Cancer
Q3 Do you have a family history of Thyroid Cancer?
Base: All respondents (N=2,398)Base: All respondents
(N=2,398)
9%
15%
8%
12%
13%
13%Papillary (1558)Papillary (1558)
Follicular (209)Follicular (209)
Mixed (281)Mixed (281)
Hurthle Cell (40)Hurthle Cell (40)
Medullary (105)Medullary (105)
Anaplastic (11)Anaplastic (11)
% with family history by cancer type% with family history by cancer type
* Excludes 194 patients with other/don’t know cancers* Excludes 194 patients with other/don’t know cancers
16
Genetic Profile
Just over 1 in 10 patients with a family history have had genetic testing
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)Base: All with a family history of
thyroid cancer (N=307)
13%
14% 10%
83%
76%
4%Yourself
Familymember
Yes No Don't know0%
88%
0%
12%
7%
7%Papillary (196)Papillary (196)
Follicular (27)Follicular (27)
Mixed (33)Mixed (33)
Hurthle Cell (3)Hurthle Cell (3)
Medullary (16)Medullary (16)
Anaplastic (1)Anaplastic (1)
% having had genetic testing by cancer type% having had genetic testing by cancer type
* Excludes 31 patients with other/don’t know cancers* Excludes 31 patients with other/don’t know cancers
N.B. Low BasesN.B. Low Bases
17
4%
18%
32%
25%
15%
5%
1%
History of Diagnosis
The average age at diagnosis was 38.4 years
Patients were diagnosed on average 5.1 years ago
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)Base: All respondents
(N=2,398)
Under 19Under 19
40-4940-49
60-6960-69
70+70+
20-2920-29
30-3930-39
50-5950-59
Patient age at diagnosis (years)
Patient age at diagnosis (years)
18
Waiting Time to Consultation
Base: All respondents (N=2,398)Base: All respondents
(N=2,398)
Q7a If you had to wait more than 3 months, please would you say exactly how long you waited?
4%
8%
20%
30%
31%
9%I was seen immediatelyI was seen immediately
2 weeks – 4 weeks2 weeks – 4 weeks
Over 4 weeks – 3 monthsOver 4 weeks – 3 months
More than 3 monthsMore than 3 months
Less than 2 weeksLess than 2 weeks
Don’t knowDon’t know
One third of patients had to wait less than 2 weeks to see a
specialist
Q7 How long did you wait to be seen by a thyroid specialist once you were referred?
Base: All who had to wait more than 3 months (N=181)Base: All who had to wait more than 3
months (N=181)
* Excludes 12 patients from other countries* Excludes 12 patients from other countries
8% waited more than 3 months to see a specialist
6.0
6.0
7.0
5.0
6.5
5.0
Median (months)Median (months)
Range (months)Range
(months)
4 - 244 - 24
4 - 154 - 15
4 - 484 - 48
Canada (42)Canada (42)
France (26)France (26)
Germany (9)Germany (9)
Spain (5)Spain (5)
UK (31)UK (31)
US (56)US (56)
4 - 364 - 36
4 - 114 - 11
4 - 364 - 36
N.B. Low BasesN.B. Low Bases
19
7%
9%
9%
12%
15%
25%
39%Noticed a lumpNoticed a lump
Difficulty swallowingDifficulty swallowing
Routine check-upRoutine check-up
Difficulty breathingDifficulty breathing
Hoarse voiceHoarse voice
Initial Consultation
Q6 What led you to see your Doctor initially?
Base: All respondents (N=2,398)Base: All respondents
(N=2,398)
39% of patients noticed a lump themselves
Family member noticed lump
Family member noticed lump
Imaging test for other reason
Imaging test for other reason
1%
9%
2%
6%
11%
19%
19%
34%EndocrinologistEndocrinologist
Head & Neck SurgeonHead & Neck Surgeon
Surgeon (general)Surgeon (general)
Endocrine SurgeonEndocrine Surgeon
OncologistOncologist
Q8 Who was the first Thyroid Specialist that you saw when you were suspected of having Thyroid Cancer?
An endocrinologist was the first specialist seen for over a third of
patients
Nuclear Medicine Specialist
Nuclear Medicine Specialist
Vascular SurgeonVascular Surgeon
OtherOther
20
Time to Diagnosis
Q11 How long did you wait from seeing your specialist to getting your diagnosis?
Base: All respondents (N=2,398)Base: All respondents
(N=2,398)
5%
18%
25%
52%Less than 2 weeksLess than 2 weeks
2 weeks – 4 weeks2 weeks – 4 weeks
More than 4 weeksMore than 4 weeks
Don’t knowDon’t know
Base: All respondents waiting more than 4 weeks for diagnosis (N=436)
Base: All respondents waiting more than 4 weeks for diagnosis (N=436)
Just over half of patients waited less than 2 weeks before being diagnosed
Q11a Please would you say exactly how long you waited?
18% waited more than 4 weeks
8.0
8.0
6.0
8.0
9.0
Median (weeks)Median (weeks)
Range (weeks)Range (weeks)
5 - 645 - 64
5 - 305 - 30
5 - 305 - 30
5 - 525 - 52
* Excludes 30 patients from other countries * Excludes 30 patients from other countries
Canada (88)Canada (88)
France (64)France (64)
Germany (32)Germany (32)
UK (73)UK (73)
US (149)US (149)
5 - 605 - 60
21
Diagnostic Tests
80% of patients reported having had a neck ultrasound
Two-thirds of patients reported having had surgery
to gain their diagnosis
Q9 Which tests did you have done to evaluate your thyroid lump before you were diagnosed with thyroid cancer?
Q10 Did you have surgery to gain your diagnosis?
Base: All respondents (N=2,398)
Base: All respondents (N=2,398)
3%
20%
6%
14%
23%
51%
72%
80%Neck UltrasoundNeck Ultrasound
Fine needle aspirationFine needle aspiration
Physical ExamPhysical Exam
MRIMRI
PET scanPET scan
CT/CAT scanCT/CAT scan
OtherOther
Thyroid hormone suppression blood test
Thyroid hormone suppression blood test
22
15%
1%
1%
11%
69%Thyroid Cancer Specialist
Thyroid Cancer Specialist
Family doctorFamily doctor
My doctor’s assistant
My doctor’s assistant
Communication of Diagnosis
Q12 Who told you that you had thyroid cancer?
Base: All respondents (N=2,398)Base: All respondents
(N=2,398)
Two-thirds of patients were told they had cancer by a thyroid cancer specialist
NurseNurse
OtherOther4%
1%
26%
29%
41%In person at hospitalIn person at hospital
In person at doctor’s officeIn person at doctor’s office
By a letterBy a letter
Q13 How was the diagnosis given?
Two-thirds of patients were given their diagnosis in
person
By a telephone callBy a telephone call
OtherOther
23
Histology
Two-thirds of patients reported being diagnosed with papillary
thyroid cancer
Of those with medullary thyroid cancer, a quarter
stated it was familial
Q14 What type of thyroid cancer were you diagnosed with? Q14a Was this a familial/ genetic type?
Base: All respondents (N=2,398)
Base: All respondents (N=2,398)
3%
5%
2%
4%
9%
12%
65%PapillaryPapillary
Mix papillary/ follicular typesMix papillary/ follicular types
FollicularFollicular
AnaplasticAnaplastic
OtherOther
Hurthle CellHurthle Cell
Don’t knowDon’t know
MedullaryMedullary
Base: (N=105)Base:
(N=105)
Patient Support at Diagnosis
5
25
Support at Diagnosis
Q15 Were you offered any additional support at the stage of diagnosis from a specialist oncology/cancer nurse or other support person?
Base: All respondents (N=2,398)
Base: All respondents (N=2,398)
Three-quarters of patients were not offered additional
support from a nurse or other support person
Q17 Were you offered psychological support from a psychologist/counsellor at the stage of diagnosis?
93% stated they were not offered psychological support
26
Information at Diagnosis
Q16 Were you given details of a patient support organisation’s details at the stage of diagnosis?
Base: All respondents (N=2,398)Base: All respondents
(N=2,398)
Q18 At the time of diagnosis were you given clear written information about your disease and its treatment?
Over 4 in 5 patients were not given details of a patient
support organisation
Almost two-thirds of patients were not given clear written
information about their disease and its treatment
27
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
Q19 Did you seek information/support from outside the hospital clinic at any point after you were diagnosed?
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 (N=2,398)Base: All respondents
(N=2,398)
26%
7%
11%
28%
28%
30%
31%
42%
88%InternetInternet
Patient Support Orgs.Patient Support Orgs.
PamphletsPamphlets
Family/ friendsFamily/ friends
Complementary therapyComplementary therapy
BooksBooks
OtherOther
Other patientsOther patients
Family doctorFamily doctor
Most useful
49%
7%
12%
5%
5%
8%
3%
1%
7%
Base: All respondents who sought information
(N=2,047)
Base: All respondents who sought information
(N=2,047)
Surgery6
29
Surgery and Complications
39% of patients experienced low blood calcium levels, and 36%
experienced voice problems following surgery
Q21 Please could you indicate if you experienced any of the following post surgery complications?
Base: All respondents (N=2,398)
Base: All respondents (N=2,398)
17%
27%
3%
11%
27%
29%
36%
39%Low blood calcium levelsLow blood calcium levels
Voice problemsVoice problems
Restricted neck/ shoulder movement
Restricted neck/ shoulder movement
InfectionInfection
OtherOther
Vocal cord palsyVocal cord palsy
No complicationsNo complications
NumbnessNumbness
1%
1%
5%
38%
54%1
2
3
4
5
Q20 How many neck surgeries have you had for thyroid cancer?
Just over half of patients had undergone one surgical procedure on
their neck
30
Resolution of Complications
Low blood calcium levels had yet to be resolved for one third of
patients
Q22a Which of your post surgery complications have not been resolved yet?Q22 Have these post surgery complications now been resolved?
Base: All who experienced post surgery complications (N=1,743)Base: All who experienced post surgery
complications (N=1,743)
22%
1%
12%
24%
31%
31%
32%Low blood calcium levelsLow blood calcium levels
Voice problemsVoice problems
Vocal cord palsyVocal cord palsy
OtherOther
Restricted neck/ shoulder movement
Restricted neck/ shoulder movement
Base: All whose post surgery complications had not yet been resolved (N=1,010)
Base: All whose post surgery complications had not yet been resolved (N=1,010)
NumbnessNumbness
42% of patients stated that all their complications had now been
resolved
InfectionInfection
RAI Treatment7
32
Radioactive Iodine Treatment
84% of patients had undergone radioactive iodine treatment. More than half had received one treatment.
Q24 How many radioactive iodine treatments have you had?
Q23 Have you had radioactive iodine treatment?
Base: All respondents (N=2,398)Base: All respondents
(N=2,398)Base: All who had radioactive iodine
treatment (N=2,011)Base: All who had radioactive iodine treatment (N=2,011)
57% underwent 1 treatment
27% underwent 2 treatments
9% underwent 3 treatments
Remainder underwent 4-15 treatments
82%
9%
89%
90%
92%
88%Papillary (1558)Papillary (1558)
Follicular (209)Follicular (209)
Mixed (281)Mixed (281)
Hurthle Cell (40)Hurthle Cell (40)
Medullary (105)Medullary (105)
Anaplastic (11)Anaplastic (11)
*excludes 194 patients with other/don’t know cancers*excludes 194 patients with other/don’t know cancers
% who have had RAI by cancer type% who have had RAI by cancer type
33
Time to RAI Treatment
Q25a Please would you say how long it was before you had radioactive iodine treatment after your first thyroid cancer surgery?
Base: All who had radioactive iodine treatment (N=2,011)Base: All who had radioactive iodine
treatment (N=2,011)
2%
28%
48%
22%One month or lessOne month or less
Between one and two months
Between one and two months
More than two months More than two months
Don’t know Don’t know
Q25 How long after surgery did you have your first radioactive iodine treatment?
Base: All who waited more than two months (N=576)Base: All who waited more than
two months (N=576)
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
*excludes 21 patients from other countries*excludes 21 patients from other countries
4.0
3.0
6.0
3.0
3.0
4.0
Median (months)Median (months)
Range (months)Range
(months)
3 - 243 - 24
3 - 243 - 24
3 - 843 - 84
Canada (131)Canada (131)
France (58)France (58)
Germany (39)Germany (39)
Italy (24)Italy (24)
UK (85)UK (85)
US (218)US (218)
3 - 103 - 10
3 - 603 - 60
3 - 243 - 24
34
Preparation for RAI Treatment
81% of patients stopped taking all thyroid hormone replacement therapy
Q26a Please would you say how many weeks you stopped taking all thyroid hormone replacement?
Q26 Did you stop taking all thyroid hormone replacement in preparation for your radioactive iodine treatment?
Base: All who had radioactive iodine treatment
(N=2,011)
Base: All who had radioactive iodine treatment
(N=2,011)
Patients stopped taking thyroid hormone replacement for on avg. 4.1 weeks prior to RAI
Patients stopped taking thyroid hormone replacement for on avg. 4.1 weeks prior to RAI
93%
78%
65%Less than 1 year
(271)Less than 1 year
(271)
1 – 5 years (1140)
1 – 5 years (1140)
More than 5 years (600)
More than 5 years (600)
% stopping all replacement therapy by time since diagnosis% stopping all replacement therapy by time since diagnosis
35
Thyroid Hormone Withdrawal
Q27 Did you experience any symptoms of hypothyroidism when you stopped thyroid hormone replacement?
Base: All who had radioactive iodine treatment
(N=2,011)
Base: All who had radioactive iodine treatment
(N=2,011)
20%
13%
34%
44%
49%
54%
61%
80%TirednessTiredness
Inability to concentrateInability to concentrate
ConstipationConstipation
No symptomsNo symptoms
DepressionDepression
Weight gainWeight gain
Feeling coldFeeling cold
Prolonged headacheProlonged headache
87% of patients experienced one or more symptoms of hypothyroidism when thyroid hormone replacement was
stopped
36
Side Effects of RAI Treatment
80% of patients who underwent radioactive iodine treatment experienced one or more side effects
Q28 Did you experience any side effects immediately following RAI treatment?
Base: All who had radioactive iodine treatment
(N=2,011)
Base: All who had radioactive iodine treatment
(N=2,011)
15%
13%
12%
20%
15%
24%
31%
34%
43%
43%
Salivary/ parotid gland swelling /painSalivary/ parotid gland swelling /pain
Taste disturbanceTaste disturbance
Skin problemsSkin problems
Dry eyesDry eyes
Nausea/ vomitingNausea/ vomiting
Sore neckSore neck
Dry mouthDry mouth
Changes in menstrual cycle (women only)Changes in menstrual cycle (women only)
Stomach painStomach pain
No side effectsNo side effects
37
Administration of RAI
Two-thirds of patients received RAI
as an inpatient
Q29 Was your treatment given…?
Base: All who had radioactive iodine treatment (excluding Argentina) Base: All who had radioactive iodine treatment
(excluding Argentina)
62%
3%
0%
3%
7%
32%
31%
France (177) France (177)
US (772) US (772)
On average, one third received RAI as an
outpatient
Canada (226) Canada (226)
Germany (425)
Germany (425)
*excludes countries with <37 patients*excludes countries with <37 patients
Overall (1,976) Overall (1,976)
Italy (37) Italy (37)
In Argentina (35) 91% of patients received RAI as an outpatientIn Argentina (35) 91% of patients received RAI as an outpatient
UK (235)UK (235)
38
RAI Treatment Facilities
62% of patients judged the treatment facilities as good or very good
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)Base: All who had radioactive iodine
treatment (N=2,011)
29%
32%
30%
3%6%
Very GoodVery Good
Very PoorVery Poor
39
Radioactive Iodine Treatment
41% of patients sought the help of their family doctor, with 22% requiring antidepressants and/or sleeping tablets
Q32 Did you require antidepressants and/ or sleeping tablets during this time?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)Base: All who had radioactive iodine
treatment (N=2,011)
Base: All who had radioactive iodine treatment (N=2,011)Base: All who had radioactive iodine
treatment (N=2,011)
40
Recovery after RAI Treatment
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)Base: All who had radioactive iodine
treatment (N=2,011)
Two-thirds of patients were able to return to normal activities within 3 months
2%
8%
10%
12%
30%
38%Less than 1 monthLess than 1 month
More than 6 monthsMore than 6 months
1-3 months1-3 months
4-6 months4-6 months
Not returned to normal range of activities
Not returned to normal range of activities
Don’t knowDon’t know
Thyrogen V Withdrawal8
42
Treatment with rhTSH (Thyrogen)
37% of patients were offered Thyrogen instead of withdrawal
Q33 Did your Thyroid Specialist offer rhTSH (Thyrogen) instead of withdrawal from thyroid hormone?
Base: All who had radioactive iodine treatment (N=2,011)Base: All who had radioactive iodine
treatment (N=2,011)
27%
42%
41%Less than 1 year (271)
Less than 1 year (271)
1 – 5 years (1,140)
1 – 5 years (1,140)
More than 5 years (600)
More than 5 years (600)
% offered Thyrogen by time since diagnosis% offered Thyrogen by time since diagnosis
43
Treatment with rhTSH (Thyrogen)
Q33a Was the option of rhTSH (Thyrogen) explained to you?
Base: All who were offered Thyrogen (N=752)Base: All who were offered Thyrogen
(N=752)
Over 9 in 10 of those who were offered Thyrogen said that the option was explained to them
44
Treatment with rhTSH (Thyrogen)
58% reported experiencing fatigue and 53% reported a headache
Q34a Please could you say what these side effects were?Q34 If you had rhTSH (Thyrogen) did you experience any side effects?
Base: All who had rhTSH (Thyrogen) (N=995)Base: All who had rhTSH (Thyrogen) (N=995)
Base: All who experienced side effects (N=221)Base: All who experienced side
effects (N=221)
24%
10%
33%
43%
53%
58%
HeadacheHeadache
Redness, pain, discoloration, hardnessRedness, pain, discoloration, hardness
OtherOther
DizzinessDizziness
Nausea/ vomitingNausea/ vomiting
FatigueFatigue
22% of patients who had Thyrogen experienced side
effects
45
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)Base: All who experienced both rhTSH
(Thyrogen) and withdrawal (N=915)
Treatment with rhTSH (Thyrogen)
87% of those who had experienced both Thyrogen
and withdrawal preferred Thyrogen
46
Treatment with rhTSH (Thyrogen)
Just under 1 in 10 patients had to pay for Thyrogen themselves
Q34b Please could you say who covered the costs for your treatment with Thyrogen?
Base: All who received rhTSH (Thyrogen) (N=995)Base: All who received rhTSH (Thyrogen)
(N=995)
7%
46%
46%
NHS/ Public Health Insurance
NHS/ Public Health Insurance
Self fundedSelf funded
Private Medical InsurancePrivate Medical Insurance
12%
2%
2%
0%
17%Canada (126)Canada (126)
France (93)France (93)
Germany (234)Germany (234)
UK (109)UK (109)
US (359)US (359)
% self-funded by country% self-funded by country
*excludes 74 patients from other countries*excludes 74 patients from other countries
47
Treatment with rhTSH (Thyrogen)
Just under a half of those who paid for Thryogen themselves were placed under
financial difficulty
Q34c Did this place you and/ or your family under financial difficulty?
Base: All who had to pay for Thyrogen themselves (N=73)Base: All who had to pay for Thyrogen themselves
(N=73)
Follow-Up Regime9
49
Current Treatment
Q38 Who is currently responsible for your care?Q37 What is your current replacement hormone regime?
Base: All respondents (N=2,398)Base: All respondents
(N=2,398)
6%
1%
9%
84%T4 (e.g. Levothyroxine, Synthoid)
T4 (e.g. Levothyroxine, Synthoid)
OtherOther
T3 (e.g. Cytomel)T3 (e.g. Cytomel)
6%
2%
3%
9%
11%
14%
54%EndocrinologistEndocrinologist
Doctor (not a specialist)Doctor (not a specialist)
Nuclear PhysicianNuclear Physician
Mixed regime of T3 and T4Mixed regime of T3 and T4 OncologistOncologist
Head and Neck SurgeonHead and Neck Surgeon
Endocrine surgeonEndocrine surgeon
OtherOther
84% of patients were currently on T4 replacement
54% of patients were currently under the care of an
endocrinologist
50
Treatment Centre
Q38b If you have changed hospitals/centres, please could you indicate the reason for this?
Base: All respondents (N=2,398)Base: All respondents
(N=2,398)
A quarter of patients had changed hospitals/centres
3%
2%
11%
4%
5%
8%
16%
21%
28%Moved houseMoved house
Dissatisfied with careDissatisfied with care
Needed more specialised care
Needed more specialised care
To access RAI/thyrogenTo access RAI/thyrogen
Convenience/closer to homeConvenience/closer to home
Insurance reasonsInsurance reasons
To stay with same doctorTo stay with same doctor
For operationFor operation
Other Other
Base: All who changed hospitals/centres (N=575)Base: All who changed
hospitals/centres (N=575)
51
Disease Status
Q39 Are you currently disease free?
Base: All respondents (N=2,398)Base: All respondents
(N=2,398)
57% of patients reported they were currently disease-free
64%
62%
34%Less than 1 year (394)
Less than 1 year (394)
1 – 5 years (1318)
1 – 5 years (1318)
More than 5 years (686)
More than 5 years (686)
18%
28%
55%
62%
58%
59%Papillary (1558)Papillary (1558)
Follicular (209)Follicular (209)
Mixed (281)Mixed (281)
Hurthle Cell (40)Hurthle Cell (40)
Medullary (105)Medullary (105)
Anaplastic (11)Anaplastic (11)
% disease-free by time since diagnosis% disease-free by time since diagnosis
% disease-free by cancer type% disease-free by cancer type*excludes 194 patients with other/don’t know cancers*excludes 194 patients with other/don’t know cancers
52
Disease Status
Q40 Do you have any metastatic disease outside the neck?
Base: All respondents (N=2,398)Base: All respondents
(N=2,398)
14% of patients had metastatic disease
Q40a How is this being managed?
Base: All with metastatic disease (N=338)Base: All with metastatic
disease (N=338)
20%
4%
5%
15%
36%
38%
56%ObservationObservation
Radioactive IodineRadioactive Iodine
SurgerySurgery
RadiotherapyRadiotherapy
ChemotherapyChemotherapy
OtherOther
Observation was the commonest method of
management
Palliative SupportPalliative Support
Assessment of Cancer Journey
10
54
Assessment of Cancer Journey
Q43 What, if anything, could your medical team have done to improve this?Q42 Overall what would you say was the most difficult aspect of your cancer journey?
Base: All respondents (N=2,398)Base: All respondents
(N=2,398)
3%
2%
8%
8%
8%
11%
22%
24%Receiving a cancer diagnosisReceiving a cancer diagnosis
17%
16%
22%
24%
27%
34%
43%
43%
45%
Introduction to patient support groups
Introduction to patient support groups
Clear information about treatment options
Clear information about treatment options
Quicker access to test results
Quicker access to test results
Lack of psychological/emotional support
Lack of psychological/emotional support
Psychological supportPsychological support
More information about disease
More information about disease
Introduction to a fellow patient
Introduction to a fellow patient
Access to a specialist/oncology nurse
Access to a specialist/oncology nurse
Receiving a cancer diagnosis and uncertainty/anxiety about the future were the most difficult aspects for
one fifth of patients
Just under half of patients stated that more information about their disease
could have improved their cancer journey
Uncertainty/anxiety about the future
Uncertainty/anxiety about the future
Side effects of treatmentSide effects of treatment
Negative changes in lifestyleNegative changes in lifestyle
Lack of informationLack of information
Effect on relationshipsEffect on relationships
Financial/ career worriesFinancial/ career worriesEasier access to cancer care
teamsEasier access to cancer care
teams
OtherOther
Recommended