international thyroid cancer patient survey revised july 2010

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

http://forum-thyroide.net/phpBB/society.php

http://sd-krebs.de/phpBB2/login.php

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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


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


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


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?


(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%







% 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?


(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


(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?


(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?


(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


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




UK (73)UK (73)

US (149)US (149)

5 - 605 - 60

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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)


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?


(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?



3%

5%

2%

4%

9%

12%

65%PapillaryPapillary

Mix papillary/ follicular typesMix papillary/ follicular types

FollicularFollicular

AnaplasticAnaplastic

OtherOther

Hurthle CellHurthle Cell


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?



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?


(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?


(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

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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?



17%

27%

3%

11%

27%

29%

36%

39%Low blood calcium levelsLow blood calcium levels

Voice problemsVoice problems

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



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?


(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%







*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




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)


(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)


% 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?


(N=2,011)


(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?


(N=2,011)


(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?


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?


treatment (N=2,011)


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?


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


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?


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)



% offered Thyrogen by time since diagnosis% offered Thyrogen by time since diagnosis

43


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


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)


87% of those who had experienced both Thyrogen

and withdrawal preferred Thyrogen

46


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)



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


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?


(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?


(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?


(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)



18%

28%

55%

62%

58%







% 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?


(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?


(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

international thyroid cancer patient survey revised july 2010

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