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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
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I don’t want to proceed and wish to end the survey here
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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
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Aboriginal / Torres Strait Islander
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Asian
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European
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Middle Eastern
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African
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Prefer not to answer
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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
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In a domestic partnership or civil union
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Other (please specify)
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Less than high school degree
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High school degree or equivalent
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Diploma
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Bachelor degree
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Masters or Doctorate degree
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Prefer not to answer
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Other (please specify)
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8. Which of the following categories best describes your employment status? Please select one option only.*
Employed
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Not employed
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Student
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Other (please specify)
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9. Age at Thyroid Cancer diagnosis
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10. Thyroid Cancer disease stage at diagnosis. Please select one option only.
*
Stage I
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Stage II
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Stage III
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Stage IV
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Don't know
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11. Thyroid Cancer disease stage currently. Please select one option only.
*
Stage I
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Stage II
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Stage III
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Stage IV
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Don't know
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12. Has your Thyroid Cancer progressed (grown larger and/or spread further) in the last 12 months? Please select one option only.
*
Yes
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No
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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
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No
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Don't know
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Please specify
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14. What is your Thyroid Cancer type? Please select one option only.
*
Papillary
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Follicular
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Medullary
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Anaplastic
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Hurthle cell
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Cancers not taking up radioactive iodine (I 131)
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Don't know
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15. Did you have surgery for your Thyroid Cancer? Please select one option only.
*
Yes
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No
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16. Has your whole thyroid been removed (as far as you know)? Please select one option only.
*
Yes (total thyroidectomy)
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No (partial thyroidectomy)
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Don't know
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Not applicable (no thyroid surgery)
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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)
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T4 (tetraiodothyronine or thyroxine)
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Both T3 and T4
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Natural (eg thyroid extract or thyroid complex)
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None
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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
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0.11.0
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1.02.0
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2.05.0
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>5.0
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Don't Know
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19. Have you received / are you receiving radioactive iodine (I 131)? Please select one option only.
*
Yes
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No
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Don't Know
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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
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No
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Don't know
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21. Have you received / are you receiving external beam radiation? Please select one option only.
*
Yes
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No
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Don't Know
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22. Have you received / are you receiving chemotherapy? Please select one option only.
*
Yes please specify below
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No
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Don't Know
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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
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No
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Don't Know
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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)
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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
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Problems with heat or cold (feeling chilly and/or heat toleration difficulty)
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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)
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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
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Feeling(s) of loss of control (feeling overwhelmed)
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Mood changes (eg anger, sadness, irritability)
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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)
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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
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If you are going to get cancer, thyroid cancer is a 'good cancer' to get, as survival rates are high
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Rather than be selfconscious about my thyroidectomy scar, I embrace it and use it to raise awareness about thyroid cancer
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No one truly understood / understands the impact on my quality of life as my body adjusted / adjusts to thyroid hormone replacement therapy following thyroidectomy
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No one is lucky to have any kind of cancer
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Removing the thyroid (gland) is no big deal, you just need to take a (thyroid hormone replacement) pill each day
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Even if thyroid cancer may not be as lifethreatening as many cancers, it is still lifealtering
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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.
*
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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
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If I reached a point during treatment at which I felt like giving up, I would probably manage to find the strength to continue
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There is nothing more devastating than when my cancer relapses or progresses
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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
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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
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I would be willing to tolerate moderate to severe side effects of cancer treatment if it meant slowing the progression of my cancer
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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
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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)
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A moment might come at which I would say “I have done everything I can, I have reached my limit”
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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)
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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
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stops your cancer from growing for 2 MONTHS
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stops your cancer from growing for 3 MONTHS
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stops your cancer from growing for 4 MONTHS
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stops your cancer from growing for 5 MONTHS
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stops your cancer from growing for 6 MONTHS
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stops your cancer from growing for 12 MONTHS
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stops your cancer from growing for >12 MONTHS
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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