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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. Contents. Executive Summary Background & Research Objectives Sample & Methodology

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International Thyroid Cancer Patient Survey Revised July 2010

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  1. 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 • Executive Summary • Background & Research Objectives • Sample & Methodology • Diagnosis of Thyroid Cancer • Patient Support at Diagnosis • Surgery • RAI Treatment • Thyrogen V Withdrawal • Follow-Up Regime • Assessment of Cancer Journey

  3. 1 Executive Summary

  4. 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

  5. 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

  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 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

  7. 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

  8. 2 Background & Research Objectives

  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 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

  11. 3 Research Design: Methodology, Sample and Fieldwork

  12. How? Sample & Recruitment Criteria Methodology Sample • Argentina • Canada • France • Germany • UK • USA • Recruitment Criteria • Thyroid Cancer patients 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

  13. 4 Diagnosis of Thyroid Cancer

  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)

  15. Genetic Profile Just over 1 in 10 patients reported a family history of Thyroid Cancer Papillary (1558) Follicular (209) Mixed (281) Hurthle Cell (40) Medullary (105) Anaplastic (11) % 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)

  16. Genetic Profile Just over 1 in 10 patients with a family history have had genetic testing Papillary (196) Follicular (27) Mixed (33) Hurthle Cell (3) Medullary (16) Anaplastic (1) % 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? N.B. Low Bases Base: All with a family history of thyroid cancer (N=307)

  17. History of Diagnosis The average age at diagnosis was 38.4 years Patients were diagnosed on average 5.1 years ago Under 19 20-29 30-39 40-49 50-59 60-69 70+ 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)

  18. 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 Range (months) Median (months) I was seen immediately Canada (42) 4 - 24 Less than 2 weeks France (26) 4 - 48 2 weeks – 4 weeks Germany (9) 4 - 15 Spain (5) 4 - 36 Over 4 weeks – 3 months UK (31) 4 - 11 More than 3 months US (56) 4 - 36 Don’t know * Excludes 12 patients from other countries Q7a If you had to wait more than 3 months, please would you say exactly how long you waited? Q7 How long did you wait to be seen by a thyroid specialist once you were referred? N.B. Low Bases Base: All respondents (N=2,398) Base: All who had to wait more than 3 months (N=181)

  19. Initial Consultation An endocrinologist was the first specialist seen for over a third of patients 39% of patients noticed a lump themselves Endocrinologist Noticed a lump Head & Neck Surgeon Routine check-up Surgeon (general) Difficulty swallowing Nuclear Medicine Specialist Imaging test for other reason Endocrine Surgeon Family member noticed lump Oncologist Hoarse voice Vascular Surgeon Difficulty breathing Other Q6 What led you to see your Doctor initially? Q8 Who was the first Thyroid Specialist that you saw when you were suspected of having Thyroid Cancer? Base: All respondents (N=2,398)

  20. 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 Canada (88) 5 - 52 2 weeks – 4 weeks France (64) 5 - 30 Germany (32) 5 - 30 More than 4 weeks UK (73) 5 - 60 US (149) 5 - 64 Don’t know * Excludes 30 patients from other countries Q11 How long did you wait from seeing your specialist to getting your diagnosis? Q11a Please would you say exactly how long you waited? Base: All respondents (N=2,398) Base: All respondents waiting more than 4 weeks for diagnosis (N=436)

  21. Diagnostic Tests 80% of patients reported having had a neck ultrasound Two-thirds of patients reported having had surgery to gain their diagnosis Neck Ultrasound Fine needle aspiration Physical Exam Thyroid hormone suppression blood test CT/CAT scan MRI PET scan Other 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)

  22. Communication of Diagnosis Two-thirds of patients were told they had cancer by a thyroid cancer specialist Two-thirds of patients were given their diagnosis in person Thyroid Cancer Specialist In person at hospital Family doctor In person at doctor’s office My doctor’s assistant By a telephone call Nurse By a letter Other Other Q12 Who told you that you had thyroid cancer? Q13 How was the diagnosis given? Base: All respondents (N=2,398)

  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 Papillary Mix papillary/ follicular types Follicular Medullary Hurthle Cell Anaplastic Other Don’t know Q14 What type of thyroid cancer were you diagnosed with? Q14a Was this a familial/ genetic type? Base: All respondents (N=2,398) Base: (N=105)

  24. 5 Patient Support at Diagnosis

  25. 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 Q17 Were you offered psychological support from a psychologist/ counsellor at the stage of 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)

  26. Information at Diagnosis 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 Q16 Were you given details of a patient support organisation’s details at the stage of diagnosis? Q18 At the time of diagnosis were you given clear written information about your disease and its treatment? Base: All respondents (N=2,398)

  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 Internet Pamphlets Patient Support Orgs. Books Family doctor Other patients Family/ friends Complementary therapy Other 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? Q19 Did you seek information/support from outside the hospital clinic at any point after you were diagnosed? Base: All respondents (N=2,398) Base: All respondents who sought information (N=2,047)

  28. 6 Surgery

  29. Surgery and Complications 39% of patients experienced low blood calcium levels, and 36% experienced voice problems following surgery Just over half of patients had undergone one surgical procedure on their neck Low blood calcium levels Voice problems Numbness Restricted neck/ shoulder movement Vocal cord palsy Infection Other No complications Q21 Please could you indicate if you experienced any of the following post surgery complications? Q20 How many neck surgeries have you had for thyroid cancer? Base: All respondents (N=2,398)

  30. 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 Low blood calcium levels Numbness Voice problems Restricted neck/ shoulder movement Vocal cord palsy Infection Other Q22 Have these post surgery complications now been resolved? 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) Base: All who experienced post surgery complications (N=1,743)

  31. 7 RAI Treatment

  32. Radioactive Iodine Treatment 84% of patients had undergone radioactive iodine treatment. More than half had received one treatment. Papillary (1558) Follicular (209) Mixed (281) Hurthle Cell (40) Medullary (105) Anaplastic (11) % who have had RAI by cancer type *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 Q23 Have you had radioactive iodine treatment? Q24 How many radioactive iodine treatments have you had? Base: All respondents (N=2,398) Base: All who had radioactive iodine treatment (N=2,011)

  33. Time to RAI Treatment Over a quarter had their first RAI treatment more than 2 months after surgery Almost half of patients had their first RAI treatment 1-2 months after surgery Range (months) Median (months) One month or less Canada (131) 3 - 24 France (58) 3 - 10 Between one and two months Germany (39) 3 - 60 More than two months Italy (24) 3 - 24 UK (85) 3 - 24 Don’t know US (218) 3 - 84 *excludes 21 patients from other countries Q25 How long after surgery did you have your first radioactive iodine 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 waited more than two months (N=576)

  34. 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 Less than 1 year (271) 1 – 5 years (1140) More than 5 years (600) % stopping all replacement therapy by time since diagnosis Q26 Did you stop taking all thyroid hormone replacement in preparation for your radioactive iodine treatment? 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)

  35. Thyroid Hormone Withdrawal 87% of patients experienced one or more symptoms of hypothyroidism when thyroid hormone replacement was stopped Tiredness Inability to concentrate Feeling cold Weight gain Depression Constipation Prolonged headache No symptoms Q27 Did you experience any symptoms of hypothyroidism when you stopped thyroid hormone replacement? Base: All who had radioactive iodine treatment (N=2,011)

  36. Side Effects of RAI Treatment 80% of patients who underwent radioactive iodine treatment experienced one or more side effects Taste disturbance Dry mouth Salivary/ parotid gland swelling /pain Nausea/ vomiting Sore neck Changes in menstrual cycle (women only) Skin problems Stomach pain Dry eyes No side effects Q28 Did you experience any side effects immediately following RAI treatment? Base: All who had radioactive iodine treatment (N=2,011)

  37. Administration of RAI Two-thirds of patients received RAI as an inpatient On average, one third received RAI as an outpatient Overall (1,976) Canada (226) France (177) Germany (425) Italy (37) UK (235) US (772) *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)

  38. RAI Treatment Facilities 62% of patients judged the treatment facilities as good or very good Very Good 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)

  39. Radioactive Iodine Treatment 41% of patients sought the help of their family doctor, with 22% requiring antidepressants and/or sleeping tablets Q31 Did you seek help from your family doctor physician during the period before and/or after treatment? Q32 Did you require antidepressants and/ or sleeping tablets during this time? 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 Two-thirds of patients were able to return to normal activities within 3 months Less than 1 month 1-3 months 4-6 months More than 6 months Not returned to normal range of activities Don’t know 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)

  41. 8 Thyrogen V Withdrawal

  42. Treatment with rhTSH (Thyrogen) 37% of patients were offered Thyrogen instead of withdrawal Less than 1 year (271) 1 – 5 years (1,140) More than 5 years (600) % 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)

  43. Treatment with rhTSH (Thyrogen) Over 9 in 10 of those who were offered Thyrogen said that the option was explained to them Q33a Was the option of rhTSH (Thyrogen) explained to you? Base: All who were offered Thyrogen (N=752)

  44. Treatment with rhTSH (Thyrogen) 22% of patients who had Thyrogen experienced side effects 58% reported experiencing fatigue and 53% reported a headache Fatigue Headache Nausea/ vomiting Dizziness Redness, pain, discoloration, hardness Other Q34 If you had rhTSH (Thyrogen) did you experience any side effects? Q34a Please could you say what these side effects were? Base: All who experienced side effects (N=221) Base: All who had rhTSH (Thyrogen) (N=995)

  45. Treatment with rhTSH (Thyrogen) 87% of those who had experienced both Thyrogen and withdrawal preferred Thyrogen 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)

  46. Treatment with rhTSH (Thyrogen) Just under 1 in 10 patients had to pay for Thyrogen themselves Canada (126) Private Medical Insurance France (93) Germany (234) NHS/ Public Health Insurance UK (109) Self funded US (359) % 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)

  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)

  48. 9 Follow-Up Regime

  49. Current Treatment 84% of patients were currently on T4 replacement 54% of patients were currently under the care of an endocrinologist T4 (e.g. Levothyroxine, Synthoid) Endocrinologist Nuclear Physician Mixed regime of T3 and T4 Oncologist Doctor (not a specialist) T3 (e.g. Cytomel) Head and Neck Surgeon Endocrine surgeon Other Other Q37 What is your current replacement hormone regime? Q38 Who is currently responsible for your care? Base: All respondents (N=2,398)

  50. Treatment Centre A quarter of patients had changed hospitals/centres Moved house Dissatisfied with care Needed more specialised care To access RAI/thyrogen Convenience/closer to home Insurance reasons To stay with same doctor For operation Other Q38b If you have changed hospitals/centres, please could you indicate the reason for this? Base: All who changed hospitals/centres (N=575) Base: All respondents (N=2,398)

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