Patients' views on the quality of services available for thalassaemia treatment

Section 1 - About
This questionnaire should be answered by thalassaemia patients over 15 years old, or the parents of patients under the age of 15. 

Your answers will be used to support TIF's mission to lobby for safe and better quality treatment services for thalassaemia patients worldwide.

Note: All information is anonymous and will be kept confidential at all times.
Please provide the following information:

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* 1. Please provide the following information:

I am (e.g., a patient; a parent; other-please specify):

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* 2. I am (e.g., a patient; a parent; other-please specify):

What is your gender?

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* 3. What is your gender?

What is your marital status (e.g., married; single; cohabiting; divorced):

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* 4. What is your marital status (e.g., married; single; cohabiting; divorced):

Do you have children?

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* 5. Do you have children?

What is your education level?

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* 6. What is your education level?

Do you currently work?

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* 7. Do you currently work?

Are you a member of a patient’s association? (Yes/ No/ Other (Please specify)

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* 8. Are you a member of a patient’s association? (Yes/ No/ Other (Please specify)

Medical information
If you are a patient, what is your diagnosis? If you are a parent, what is the diagnosis of your child?

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* 9. If you are a patient, what is your diagnosis? If you are a parent, what is the diagnosis of your child?

At what age did you start receiving iron chelation therapy?

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* 10. At what age did you start receiving iron chelation therapy?

How is your current transfusion regime?

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* 11. How is your current transfusion regime?

If regularly transfused, what is the usual Hb level pre-transfusion?

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* 12. If regularly transfused, what is the usual Hb level pre-transfusion?

Where do you receive your treatment at?

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* 13. Where do you receive your treatment at?

Section 2- Quality of the services used
Please answer the following questions to give us a clear indication of the quality of treatment you are receiving.
Are blood supplies adequate at the centre you are transfused or are there delays in transfusion?

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* 14. Are blood supplies adequate at the centre you are transfused or are there delays in transfusion?

What kind of blood filtration is available at the clinic?

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* 15. What kind of blood filtration is available at the clinic?

What chelation drugs do you use?

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* 16. What chelation drugs do you use?

How often do you receive chelation?

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* 17. How often do you receive chelation?

How available are iron chelation drugs to you and at what dose?

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* 18. How available are iron chelation drugs to you and at what dose?

How often is your ferritin level measured?

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* 19. How often is your ferritin level measured?

How often is cardiac iron measured by T2*?

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* 20. How often is cardiac iron measured by T2*?

Who pays for your treatment? (Tick all that apply)

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* 21. Who pays for your treatment? (Tick all that apply)

What specialist(s) do you visit, in addition to your main treating doctor?

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* 22. What specialist(s) do you visit, in addition to your main treating doctor?

How often do you visit these specialists? (If you do not visit the specialist mentioned, leave the row blank)

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* 23. How often do you visit these specialists? (If you do not visit the specialist mentioned, leave the row blank)

  Every 15 days Every 30 days Every 6 months Every 1 year Every 2 years
Pathologist (General Practitioner)
Haematologist
Paediatrician
Heart specialist
Endocrinologist
Diabetologist (If separate from endocrinologist)
Psychologist
Liver specialist
Nephrologist
To what extent would you say the following statements are true?
* Questions based on the PACIC (Patients’ Assessment of Care for Chronic Conditions) questionnaire

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* 24. To what extent would you say the following statements are true?
* Questions based on the PACIC (Patients’ Assessment of Care for Chronic Conditions) questionnaire

  Never Very occasionally  Sometimes Most of the times Always
I am given choices about treatment to think about
I am satisfied that care is well organised
I am asked to talk about my goals in caring for my condition
I am encouraged to join a patients’ association and other community activities
Where are you transfused?

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* 25. Where are you transfused?

When are you usually transfused?

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* 26. When are you usually transfused?

Where do you receive medical treatment for your condition?  (tick all that apply)

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* 27. Where do you receive medical treatment for your condition?  (tick all that apply)

Do you think the treatment that you are receiving is correct and complete?

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* 28. Do you think the treatment that you are receiving is correct and complete?

How do you find out what the correct treatment for your condition is?

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* 29. How do you find out what the correct treatment for your condition is?

Do you have an accredited MRI centre for iron overload?

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* 30. Do you have an accredited MRI centre for iron overload?

If MRI is used to measure your Liver Iron Concentration, with what methodology is it used?

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* 31. If MRI is used to measure your Liver Iron Concentration, with what methodology is it used?

How is your liver iron measured?

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* 32. How is your liver iron measured?

How would you rate access to the treatment centre (in terms of distance, cost etc.):

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* 33. How would you rate access to the treatment centre (in terms of distance, cost etc.):

How many days per year do you lose from education or work because of having to attend treatment for thalassaemia?

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* 34. How many days per year do you lose from education or work because of having to attend treatment for thalassaemia?

How easy do you find it to talk to friends and colleagues about your condition?

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* 35. How easy do you find it to talk to friends and colleagues about your condition?

What is your latest Liver Iron Concentration? (If there is difficulty to answer, please ask your doctor)

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* 36. What is your latest Liver Iron Concentration? (If there is difficulty to answer, please ask your doctor)

Your current ferritin level is:

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* 37. Your current ferritin level is:

What is your latest T2* level?

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* 38. What is your latest T2* level?

How important and/or useful do you think the following factors are?
Please answer all the questions, even where they seem to repeat the same thing.

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* 39. How important and/or useful do you think the following factors are?
Please answer all the questions, even where they seem to repeat the same thing.

  Not necessary Of little use  Useful Very useful Essential
Follow good clinical practice guidelines?
A coordinated team with an experienced doctor in charge?
The presence of a psychologist/social worker in the centre?
The centre is involved in research?
Doctors discuss treatment plans and gives me choices?
The centre communicates and collaborates with other specialised centres in the country?
Thank you very much for your input!
Please return this questionnaire to the Thalassaemia International Federation
PO Box 2880, 2083 Strovolos, Cyprus – Tel: +357 22 310 120 / Fax: +357 22 314 552
Email: thalassaemia@cytanet.com.cy

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