Patients' views on the quality of services available for the treatment of sickle cell disease

This questionnaire should be answered by sickle cell patients over 15 years old, or the parents of sickle cell 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 SCD patients worldwide.
Note: All information is anonymous and will be kept confidential at all times.

Section 1 - About

* 1. Please provide the following information:

* 2. I am

* 3. What is your gender?

* 4. Are you married?

* 5. Do you have children?

* 6. Are you a member of a patient’s association?

* 7. What is your work status?

* 8. What is your education level?

Medical information

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

* 10. How is your current transfusion regime?

* 11. Treatment centre:

* 12. You or your child were diagnosed:

* 13. What do you take to control infections?

* 14. At what age did you start?

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.

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

* 16. Your treatment centre can provide the following services (tick all that apply):

* 17. 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

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

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

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

* 21. How many days per year do you lose from education or work because of having to attend treatment for sickle cell disease?

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

* 23. 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

* 24. You have been instructed about the following (tick all that apply):

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

T