differentiated thyroid cancer patient...

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Page 1 We are conducting a survey on behalf of a pharmaceutical company to gain a better understanding of the physical, emotional and psychological impact of having thyroid cancer and how this affects the Quality of Life of people with thyroid cancer. It also aims to obtain insight into patient preferences and what can be done to improve disease management and to reduce the burden that thyroid cancer causes. The survey consists of 39 questions and should take approximately 30 minutes to complete. The incidence of thyroid cancer in Australia is increasing, particularly in women, where it is in the top ten cancers. There were 2039 new cases of thyroid cancer diagnosed in Australia in 2009, but only 366 new cases in 1982, a more than 5fold increase of thyroid cancer cases in 27 years. The number of new thyroid cancer cases is increasing at about 5% per year (Australian Institute of Health and Welfare). Although the overall prognosis of thyroid cancer is the best of all the other cancers, and Australians have a better survival than most on an international comparison, it still remains a lifealtering disease for those who are diagnosed with it. The results of the survey will be used to improve management of the disease and to educate the thyroid cancer community, including patients, families, caregivers, administrators and physicians, to help improve the overall health and care of people with thyroid cancer. The results will be aggregated (combined) and your anonymity (confidentiality) protected; no identifying details will be disclosed to the client or any other third party. If you have any questions or concerns please contact Ric DeGaris on 03 9251 0777 Monday to Friday, during normal business hours. We sincerely appreciate your time, and thank you for helping us to collect this information. The Team at Commercial Eyes. Privacy Statement Commercial Eyes is bound by the Privacy Act 1988 (Cth) and is committed to protecting your privacy and uses your personal information for market research purposes only. Commercial Eyes will not sell, trade, give or pass on to any third party any personal information unless you consent to such a disclosure or we are required by law. You may access the information we collect from you, or you may make a complaint about breaches to the Privacy Act, by contacting the Privacy Officer at Commercial Eyes on 03 9251 0777. Further information about our collection, use, storage and disclosure of your personal information is available on our privacy policy which can be found at http://www.commercialeyes.com.au/disclaimerprivacypolicy/ This Survey has been endorsed by Rare Cancers Australia. Differentiated Thyroid Cancer Patient Survey

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Page 1: Differentiated Thyroid Cancer Patient Surveyrca.blob.core.windows.net/assets/uploads/files/DTC... · The incidence of thyroid cancer in Australia is increasing, particularly in women,

Page 1

We are conducting a survey on behalf of a pharmaceutical company to gain a better understanding of the physical, emotional and psychological impact of having thyroid cancer and how this affects the Quality of Life of people with thyroid cancer. It also aims to obtain insight into patient preferences and what can be done to improve disease management and to reduce the burden that thyroid cancer causes. The survey consists of 39 questions and should take approximately 30 minutes to complete.

The incidence of thyroid cancer in Australia is increasing, particularly in women, where it is in the top ten cancers. There were 2039 new cases of thyroid cancer diagnosed in Australia in 2009, but only 366 new cases in 1982, a more than 5­fold increase of thyroid cancer cases in 27 years. The number of new thyroid cancer cases is increasing at about 5% per year (Australian Institute of Health and Welfare).

Although the overall prognosis of thyroid cancer is the best of all the other cancers, and Australians have a better survival than most on an international comparison, it still remains a life­altering disease for those who are diagnosed with it.

The results of the survey will be used to improve management of the disease and to educate the thyroid cancer community, including patients, families, caregivers, administrators and physicians, to help improve the overall health and care of people with thyroid cancer.

The results will be aggregated (combined) and your anonymity (confidentiality) protected; no identifying details will be disclosed to the client or any other third party.

If you have any questions or concerns please contact Ric DeGaris on 03 9251 0777 Monday to Friday, during normal business hours.

We sincerely appreciate your time, and thank you for helping us to collect this information. The Team at Commercial Eyes.

Privacy Statement Commercial Eyes is bound by the Privacy Act 1988 (Cth) and is committed to protecting your privacy and uses your personal information for market research purposes only. Commercial Eyes will not sell, trade, give or pass on to any third party any personal information unless you consent to such a disclosure or we are required by law. You may access the information we collect from you, or you may make a complaint about breaches to the Privacy Act, by contacting the Privacy Officer at Commercial Eyes on 03 9251 0777. Further information about our collection, use, storage and disclosure of your personal information is available on our privacy policy which can be found at http://www.commercialeyes.com.au/disclaimer­privacy­policy/

This Survey has been endorsed by Rare Cancers Australia.

Differentiated Thyroid Cancer Patient Survey

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We are required to pass on to our client, details of any side effects, adverse events and product technical complaints related to their own products that are raised during the course of market research. Although this is an online market research survey/interview with responses treated in confidence, should you mention a side effect, adverse event or product technical complaint that has occurred during use of a product (either by yourself or someone else), we will need to report this. If you decide to disclose your personal details in association with any side effect, adverse event or product technical complaint report, this information will be disclosed to the commissioning company / disclosed to our drug safety department. In such a situation, you may be contacted specifically in relation to the side effect, adverse event or product technical complaint. Everything else you contribute during the course of the survey / interview will remain confidential. Are you happy to proceed with the survey on this basis? Please indicate your response by selecting the appropriate option below:

1. Options

Pharmacovigilance (Drug Safety) Statement

*

I would like to proceed and give permission for my contact details to be passed on to the drug safety department of the company if a side effect, adverse event or product technical complaint is

mentioned by me during the survey

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I would like to proceed, but do not wish for my contact details to be passed on to the drug safety department of the company if a side effect, adverse event or product technical complaint is mentioned by

me during the survey

nmlkj

I don’t want to proceed and wish to end the survey here

nmlkj

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2. What is your gender?

3. Current age

4. Where do you live (State/Territory and Postcode details only)

5. What is your ethnicity / nationality? Please select one option only.

*

*

*State/Territory:

Post Code:

*

Female

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Male

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Australian

nmlkj

Aboriginal / Torres Strait Islander

nmlkj

Asian

nmlkj

European

nmlkj

Middle Eastern

nmlkj

African

nmlkj

Prefer not to answer

nmlkj

Other (please specify)

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6. Which of the following best describes your current relationship status? Please select one option only.

7. What is the highest level of school you have completed or the highest degree you have received? Please select one option only.

*

*

Single

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Married

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Divorced

nmlkj

In a domestic partnership or civil union

nmlkj

Other (please specify)

55

66

Less than high school degree

nmlkj

High school degree or equivalent

nmlkj

Diploma

nmlkj

Bachelor degree

nmlkj

Masters or Doctorate degree

nmlkj

Prefer not to answer

nmlkj

Other (please specify)

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Page 5

8. Which of the following categories best describes your employment status? Please select one option only.*

Employed

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Not employed

nmlkj

Student

nmlkj

Other (please specify)

55

66

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9. Age at Thyroid Cancer diagnosis

*55

66

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10. Thyroid Cancer disease stage at diagnosis. Please select one option only.

*

Stage I

nmlkj

Stage II

nmlkj

Stage III

nmlkj

Stage IV

nmlkj

Don't know

nmlkj

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Page 8

11. Thyroid Cancer disease stage currently. Please select one option only.

*

Stage I

nmlkj

Stage II

nmlkj

Stage III

nmlkj

Stage IV

nmlkj

Don't know

nmlkj

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Page 9

12. Has your Thyroid Cancer progressed (grown larger and/or spread further) in the last 12 months? Please select one option only.

*

Yes

nmlkj

No

nmlkj

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13. Has your Thyroid Cancer spread to other parts of your body? Please select one option only.

*

Yes ­ please specify if known

nmlkj

No

nmlkj

Don't know

nmlkj

Please specify

55

66

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14. What is your Thyroid Cancer type? Please select one option only.

*

Papillary

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Follicular

nmlkj

Medullary

nmlkj

Anaplastic

nmlkj

Hurthle cell

nmlkj

Cancers not taking up radioactive iodine (I 131)

nmlkj

Don't know

nmlkj

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15. Did you have surgery for your Thyroid Cancer? Please select one option only.

*

Yes

nmlkj

No

nmlkj

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16. Has your whole thyroid been removed (as far as you know)? Please select one option only.

*

Yes (total thyroidectomy)

nmlkj

No (partial thyroidectomy)

nmlkj

Don't know

nmlkj

Not applicable (no thyroid surgery)

nmlkj

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17. What type of thyroid hormone replacement therapy have you received / are you receiving? Please select one option only.

*

T3 (triiodothyronine)

nmlkj

T4 (tetraiodothyronine or thyroxine)

nmlkj

Both T3 and T4

nmlkj

Natural (eg thyroid extract or thyroid complex)

nmlkj

None

nmlkj

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18. If you know your last thyroid­stimulating hormone (TSH) level, please select the correct range below. Please select one option only.

*

<0.01

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0.01­0.1

nmlkj

0.1­1.0

nmlkj

1.0­2.0

nmlkj

2.0­5.0

nmlkj

>5.0

nmlkj

Don't Know

nmlkj

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19. Have you received / are you receiving radioactive iodine (I 131)? Please select one option only.

*

Yes

nmlkj

No

nmlkj

Don't Know

nmlkj

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20. Do you have radioactive iodine­refractory Thyroid Cancer (RAI­R DTC)? That is Thyroid Cancer that is resistant to treatment with radioactive iodine (RAI)? Please select one option only.

*

Yes

nmlkj

No

nmlkj

Don't know

nmlkj

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21. Have you received / are you receiving external beam radiation? Please select one option only.

*

Yes

nmlkj

No

nmlkj

Don't Know

nmlkj

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22. Have you received / are you receiving chemotherapy? Please select one option only.

*

Yes ­ please specify below

nmlkj

No

nmlkj

Don't Know

nmlkj

Please specify

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23. Have you received / are you receiving targeted drug therapy. That is therapy that targets or interferes with specific molecules involved in cancer growth ­ for example Vandetanib (Caprelsa®), Sorafenib (Nexavar®)? Please select one option only.

*

Yes ­ please specify below

nmlkj

No

nmlkj

Don't Know

nmlkj

Please specify

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24. How would you describe your general health over the past month? Please select one option only.

*Poor Fair Good Very Good Excellent

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25. Over the past month has your health impacted your ability to perform any of the following activities? Please select one option only for each of the listed activities.

*Not affected Slightly affected Moderately affected Severely affected Unable to do at all

Household chores nmlkj nmlkj nmlkj nmlkj nmlkj

Social life nmlkj nmlkj nmlkj nmlkj nmlkj

Hobbies or leisure activities nmlkj nmlkj nmlkj nmlkj nmlkj

Self­care (dressing, washing, grooming) nmlkj nmlkj nmlkj nmlkj nmlkj

Walking (several blocks ­ 500 metres) nmlkj nmlkj nmlkj nmlkj nmlkj

Sex life nmlkj nmlkj nmlkj nmlkj nmlkj

Paid employment nmlkj nmlkj nmlkj nmlkj nmlkj

Climbing (one flight of stairs) nmlkj nmlkj nmlkj nmlkj nmlkj

Vigorous activities (eg sport, running, gym, etc)

nmlkj nmlkj nmlkj nmlkj nmlkj

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26. Please rate your experience with the following health related issues associated with your Thyroid Cancer and treatment (Part 1): Please select one option only for each of the listed health related issues. Definitions: "Mild": the experience does not interfere with usual daily activities "Moderate": the experience impacts usual daily activities "Severe": the experience interrupts usual daily activities

*

Not experiencedMild to moderate in the past ­

now better or resolvedSevere in the past ­ now better or

resolvedOngoing ­ mild to moderate impact on quality of life

Ongoing ­ significant and marked impact on quality of life

Headaches nmlkj nmlkj nmlkj nmlkj nmlkj

Swallowing difficulties nmlkj nmlkj nmlkj nmlkj nmlkj

Dry mouth nmlkj nmlkj nmlkj nmlkj nmlkj

Hot flushes nmlkj nmlkj nmlkj nmlkj nmlkj

Palpitations (abnormal heart beat) nmlkj nmlkj nmlkj nmlkj nmlkj

Abdominal pain nmlkj nmlkj nmlkj nmlkj nmlkj

Shortness of breath / persistent cough / coughing blood

nmlkj nmlkj nmlkj nmlkj nmlkj

Problems with heat or cold (feeling chilly and/or heat toleration difficulty)

nmlkj nmlkj nmlkj nmlkj nmlkj

Neck pain nmlkj nmlkj nmlkj nmlkj nmlkj

Voice changes (eg hoarse or weak) nmlkj nmlkj nmlkj nmlkj nmlkj

Muscle and/or joint/bone pain nmlkj nmlkj nmlkj nmlkj nmlkj

Low calcium levels nmlkj nmlkj nmlkj nmlkj nmlkj

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27. Please rate your experience with the following health related issues associated with your Thyroid Cancer and treatment (Part 2): Please select one option only for each of the listed health related issues.

*

Not experiencedMild to moderate in the past ­

now better or resolvedSevere in the past ­ now better or

resolvedOngoing ­ mild to moderate impact on quality of life

Ongoing ­ significant and marked impact on quality of life

Depression nmlkj nmlkj nmlkj nmlkj nmlkj

Suicidal thoughts nmlkj nmlkj nmlkj nmlkj nmlkj

Changes in weight nmlkj nmlkj nmlkj nmlkj nmlkj

Anxious nmlkj nmlkj nmlkj nmlkj nmlkj

Agitated / restless nmlkj nmlkj nmlkj nmlkj nmlkj

Poor concentration nmlkj nmlkj nmlkj nmlkj nmlkj

Low energy / tired nmlkj nmlkj nmlkj nmlkj nmlkj

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28. Please review the list of adverse events (side­effects) below and for each one, select the option relevant to you. For adverse events (side­effects) you have not experienced, select the N/A (not applicable) option. Please select one option only.

*Tolerable (able to endure) Intolerable (unable to endure) N/A

Rash nmlkj nmlkj nmlkj

Nausea nmlkj nmlkj nmlkj

Abdominal pain nmlkj nmlkj nmlkj

Pruritus (itchy skin) nmlkj nmlkj nmlkj

Fatigue tiredness) nmlkj nmlkj nmlkj

Diarrhoea nmlkj nmlkj nmlkj

Alopecia (baldness) nmlkj nmlkj nmlkj

Anorexia (loss of appetite) nmlkj nmlkj nmlkj

Hand­Foot skin reaction nmlkj nmlkj nmlkj

Hypertension (high blood pressure) nmlkj nmlkj nmlkj

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29. Please select the number (0­10) that best describes how much distress you have experienced due to your Thyroid Cancer over the past month, including today (0 ­ no distress and 10 ­ extreme distress): Please select one option only.

*

0 (no distress) 1 2 3 4 5 6 7 8 910 (extreme distress)

nmlkj nmlkj nmlkj nmlkj nmlkj nmlkj nmlkj nmlkj nmlkj nmlkj nmlkj

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30. Please rate each of the following in terms of causing you distress because of your Thyroid Cancer (Part 1). Please select one option only for each listed cause of distress.

*No distress Minimal distress Moderate distress Significant distress Overwhelming distress

Psychological (emotional) impairment nmlkj nmlkj nmlkj nmlkj nmlkj

Limitation of daily living activities nmlkj nmlkj nmlkj nmlkj nmlkj

Physical impairment nmlkj nmlkj nmlkj nmlkj nmlkj

Fatigue nmlkj nmlkj nmlkj nmlkj nmlkj

Financial stress nmlkj nmlkj nmlkj nmlkj nmlkj

Pain nmlkj nmlkj nmlkj nmlkj nmlkj

Reduced employment and income nmlkj nmlkj nmlkj nmlkj nmlkj

General disability nmlkj nmlkj nmlkj nmlkj nmlkj

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31. Please rate each of the following in terms of causing you distress because of your Thyroid Cancer (Part 2). Please select one option only for each listed cause of distress.

*No distress Minimal distress Moderate distress Significant distress Overwhelming distress

Change in relationships with family and/or friends

nmlkj nmlkj nmlkj nmlkj nmlkj

Feeling(s) of loss of control (feeling overwhelmed)

nmlkj nmlkj nmlkj nmlkj nmlkj

Mood changes (eg anger, sadness, irritability)

nmlkj nmlkj nmlkj nmlkj nmlkj

Feeling(s) of waiting to die nmlkj nmlkj nmlkj nmlkj nmlkj

Social isolation nmlkj nmlkj nmlkj nmlkj nmlkj

Low motivation levels (eg lack interest in things)

nmlkj nmlkj nmlkj nmlkj nmlkj

Low self­worth nmlkj nmlkj nmlkj nmlkj nmlkj

Inability to make plans / decisions nmlkj nmlkj nmlkj nmlkj nmlkj

Fear of the future nmlkj nmlkj nmlkj nmlkj nmlkj

Lack of meaning or purpose in life nmlkj nmlkj nmlkj nmlkj nmlkj

Inability to think clearly nmlkj nmlkj nmlkj nmlkj nmlkj

Being a burden to family / carers nmlkj nmlkj nmlkj nmlkj nmlkj

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32. Read the following statements and select the most appropriate option as to how it makes you feel. Please select one option only for each of the listed statements.

*Strongly disagree Disagree Neither disagree or agree Agree Strongly agree

Learning to live with a lifelong chronic illness (permanent hypothyroidism) following thyroidectomy, is often as hard as dealing with the cancer itself

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Thyroid cancer does not get the attention it should because it is a 'less common' cancer

nmlkj nmlkj nmlkj nmlkj nmlkj

If you are going to get cancer, thyroid cancer is a 'good cancer' to get, as survival rates are high

nmlkj nmlkj nmlkj nmlkj nmlkj

Rather than be self­conscious about my thyroidectomy scar, I embrace it and use it to raise awareness about thyroid cancer

nmlkj nmlkj nmlkj nmlkj nmlkj

No one truly understood / understands the impact on my quality of life as my body adjusted / adjusts to thyroid hormone replacement therapy following thyroidectomy

nmlkj nmlkj nmlkj nmlkj nmlkj

No one is lucky to have any kind of cancer

nmlkj nmlkj nmlkj nmlkj nmlkj

Removing the thyroid (gland) is no big deal, you just need to take a (thyroid hormone replacement) pill each day

nmlkj nmlkj nmlkj nmlkj nmlkj

Even if thyroid cancer may not be as life­threatening as many cancers, it is still life­altering

nmlkj nmlkj nmlkj nmlkj nmlkj

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33. What comments, suggestions, or preferences do you have, if any, for how to improve the care of patients diagnosed and treated for Thyroid Cancer? (Tip try to comment on those areas you rated as 'poor' or 'fair' in this survey). If you have no comments or suggestions, please write 'Nil' in the box and proceed with the survey.

*

55

66

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34. Evaluate each of the following statements. Please select one option only for each of the listed statements.

*Strongly disagree Disagree Neither disagree nor agree Agree Strongly agree

Side effects of cancer treatment, even if moderate to severe, are usually manageable

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I can imagine some side effects of cancer treatment being so bad, that I would refuse the treatment, even if that meant my cancer progressed more quickly

nmlkj nmlkj nmlkj nmlkj nmlkj

If I reached a point during treatment at which I felt like giving up, I would probably manage to find the strength to continue

nmlkj nmlkj nmlkj nmlkj nmlkj

There is nothing more devastating than when my cancer relapses or progresses

nmlkj nmlkj nmlkj nmlkj nmlkj

If a cancer treatment stopped my cancer growing for 5­6 months but had some moderate­severe side effects, I would prefer to keep receiving the treatment until my cancer progressed, rather than have a period of no treatment

nmlkj nmlkj nmlkj nmlkj nmlkj

I would do anything to live a bit longer nmlkj nmlkj nmlkj nmlkj nmlkj

I would rather not have treatment that slowed the progression of my cancer, if it interfered with me leading a normal life

nmlkj nmlkj nmlkj nmlkj nmlkj

I would be willing to tolerate moderate to severe side effects of cancer treatment if it meant slowing the progression of my cancer

nmlkj nmlkj nmlkj nmlkj nmlkj

If I had to endure 6 months of intensive treatment which had side effects, to live for an extra 6 months, then I would be willing to get that treatment

nmlkj nmlkj nmlkj nmlkj nmlkj

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I would accept hard to tolerate treatment, even if the chance of it prolonging my life was very small (eg as little as one percent)

nmlkj nmlkj nmlkj nmlkj nmlkj

A moment might come at which I would say “I have done everything I can, I have reached my limit”

nmlkj nmlkj nmlkj nmlkj nmlkj

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35. On the scale below, please indicate the level of side­effects (toxicities) of cancer treatment you would be willing to tolerate if the treatment stopped your cancer from growing for 5­6 months. 1 represents 'no' side­effects, while 10 represents 'very severe' side­effects. Please select one option only.

*

0 (none) 1 2 3 4 5 (moderate) 6 7 8 9 10 (v.severe)

nmlkj nmlkj nmlkj nmlkj nmlkj nmlkj nmlkj nmlkj nmlkj nmlkj nmlkj

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36. Imagine you are offered a cancer treatment that stops your cancer from growing for a period of time. Select the level of side­effects from the cancer treatment you would be willing to accept, for each of the following statements: Please select one option only for each of the listed statements. Definitions: "Mild" side­effects: the experience does not interfere with usual daily activities "Moderate" side­effects: the experience impacts usual daily activities "Severe" side­effects: the experience interrupts usual daily activities

*

No side­effects Mild side­effects Moderate side­effects Severe side­effects Very severe side­effects

stops your cancer from growing for 1 MONTH

nmlkj nmlkj nmlkj nmlkj nmlkj

stops your cancer from growing for 2 MONTHS

nmlkj nmlkj nmlkj nmlkj nmlkj

stops your cancer from growing for 3 MONTHS

nmlkj nmlkj nmlkj nmlkj nmlkj

stops your cancer from growing for 4 MONTHS

nmlkj nmlkj nmlkj nmlkj nmlkj

stops your cancer from growing for 5 MONTHS

nmlkj nmlkj nmlkj nmlkj nmlkj

stops your cancer from growing for 6 MONTHS

nmlkj nmlkj nmlkj nmlkj nmlkj

stops your cancer from growing for 12 MONTHS

nmlkj nmlkj nmlkj nmlkj nmlkj

stops your cancer from growing for >12 MONTHS

nmlkj nmlkj nmlkj nmlkj nmlkj

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37. Please select the one option below that best reflects how you feel

*

I would be willing to accept MINIMAL side­effects from my cancer treatment, even if there may be no change to my disease, because doing nothing is even more devastating to me

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I would be willing to accept MODERATE side­effects from my cancer treatment, even if there may be no change to my disease, because doing nothing is even more devastating to me

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I would be willing to accept SEVERE side­effects from my cancer treatment, even if there may be no change to my disease, because doing nothing is even more devastating to me

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I would be willing to accept VERY SEVERE side­effects from my cancer treatment, even if there may be no change to my disease, because doing nothing is even more devastating to me

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None of the above

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38. Please select the one option below that best reflects how you feel

*

I would be willing to accept MINIMAL side­effects from my cancer treatment, but only if it was going to extend my life

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I would be willing to accept MODERATE side­effects from my cancer treatment, but only if it was going to extend my life

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I would be willing to accept SEVERE side­effects from my cancer treatment, but only if it was going to extend my life

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I would be willing to accept VERY SEVERE side­effects from my cancer treatment, but only if it was going to extend my life

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None of the above

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39. Imagine that you are told that you have 10 YEARS LEFT TO LIVE. You are also told that you can choose: ­ to live these 10 YEARS in your CURRENT HEALTH STATE (ie as you are today with your thyroid cancer) OR ­ to GIVE UP some YEARS OF LIFE to live for a SHORTER PERIOD in FULL HEALTH (ie no thyroid cancer) Choose the number of years in FULL HEALTH, that you think is of EQUAL VALUE to 10 YEARS in your CURRENT HEALTH STATE. As an example, you might feel 8 years in FULL HEALTH (no thyroid cancer) = 10 years in your CURRENT HEALTH STATE (with thyroid cancer), so you would select the '8 years' option below. Please select one option only.

*

1 year 2 years 3 years 4 years 5 years 6 years 7 years 8 years 9 years

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You have reached the end of the survey. Thank­you for participating. Your answers, along with those of others completing the survey, will assist in optimising thyroid cancer disease management and in helping to improve the overall health and care of people suffering from thyroid cancer.

Postal Address for paper (hard copy) completed surveys:

Ric DeGaris Commercial Eyes Pty Ltd Level 11, 500 Collins Street, Melbourne, 3000, Vic (P) 03 9251 0777 (F) 03 9427 7600

Surveys MUST be received NO LATER than 17 October 2014

End of Survey