Questionnaire B: Sickle Cell Disease Patients
Quality of the services available for the treatment of SCD

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

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* 1. Please provide the following information:

Age (in years):

I live in (please specify your country of residence):

Ethnic origin (e.g., African, Asian, European, Middle-Eastern, Latin American, North American, Mixed race - please specify)

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* 2. I am

A patient

A Parent

Other (please specify)

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* 3. What is your gender?

Male

Female

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* 4. Are you married?

Yes

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* 5. Do you have children?

Yes

If yes, how many children do you have?

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

Yes

Other (please specify)

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* 7. What is your work status?

working part time

working full time

not working by choice

not working because I am unable to find a job

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* 8. What is your education level?

university graduate

student/school

playshool/kindergarten

Other (please specify)

Medical information

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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?

Sickle cell disease

Sickle cell/b-thal

Other (please specify)

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* 10. How is your current transfusion regime?

I am not transfused

I am regularly transfused

I am occasionally transfused

Comments:

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* 11. Treatment centre:

Country:

City:

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* 12. You or your child were diagnosed:

Through newborn screening

First 2 years of life

Later

I don't know

Other (please specify)

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* 13. What do you take to control infections?

Penicillin by mouth

Pneumococcal vaccine

H. influenzae vaccine

I have been advised that fever above 38.5°C is a reason to seek urgent medical attention.

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* 14. At what age did you start?

Penicillin by mouth started at age

Penicillin by mouth stopped at age:

Pneumococcal vaccine First dose given at age:

Pneumococcal vaccine Last dose given at age:

H. influenzae vaccine First dose given at age:

H. influenzae vaccine Last dose given at age:

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.

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

Specialised haemoglobinopathy centre

General haematology department at a hospital

General paediatric department of a hospital

Private clinic/centre (non-specialist)

Other (describe)

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

Transcranial Doppler

MRI

Tests for hearing

Measurement of liver iron concentration

Exchange transfusion

Other (please specify)

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

Please describe

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

Yes

Not sure

Please describe

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

From my doctor

Other doctor

Reading the protocol

The association

Other patients

Internet

Other (please specify)

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

Very easy

Easy

Difficult

Very difficult

Not available

Available but too expensive

Comments

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

None

1-5 days

6-10 days

11-15 days

16 or more days

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

Very easy

Easy

Difficult

Very difficult/impossible

Comments

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* 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	Follow good clinical practice guidelines Not necessary	Follow good clinical practice guidelines Of little use	Follow good clinical practice guidelines Useful	Follow good clinical practice guidelines Very useful	Follow good clinical practice guidelines Essential
A coordinated team with an experienced doctor in charge?	A coordinated team with an experienced doctor in charge? Not necessary	A coordinated team with an experienced doctor in charge? Of little use	A coordinated team with an experienced doctor in charge? Useful	A coordinated team with an experienced doctor in charge? Very useful	A coordinated team with an experienced doctor in charge? Essential
The presence of a psychologist/social worker in the centre?	The presence of a psychologist/social worker in the centre? Not necessary	The presence of a psychologist/social worker in the centre? Of little use	The presence of a psychologist/social worker in the centre? Useful	The presence of a psychologist/social worker in the centre? Very useful	The presence of a psychologist/social worker in the centre? Essential
The centre is involved in research	The centre is involved in research Not necessary	The centre is involved in research Of little use	The centre is involved in research Useful	The centre is involved in research Very useful	The centre is involved in research Essential
Doctors discuss treatment plans and gives me choices	Doctors discuss treatment plans and gives me choices Not necessary	Doctors discuss treatment plans and gives me choices Of little use	Doctors discuss treatment plans and gives me choices Useful	Doctors discuss treatment plans and gives me choices Very useful	Doctors discuss treatment plans and gives me choices Essential
The centre communicates and collaborates with other specialised centres in the country	The centre communicates and collaborates with other specialised centres in the country Not necessary	The centre communicates and collaborates with other specialised centres in the country Of little use	The centre communicates and collaborates with other specialised centres in the country Useful	The centre communicates and collaborates with other specialised centres in the country Very useful	The centre communicates and collaborates with other specialised centres in the country Essential

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

How to control pain at home

When to go to hospital for pain control

To drink a lot of fluids during a painful crisis

Other (please specify)

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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* 1. Please provide the following information:

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* 2. I am

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* 3. What is your gender?

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* 4. Are you married?

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* 5. Do you have children?

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

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* 7. What is your work status?

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* 8. What is your education level?

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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?

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* 10. How is your current transfusion regime?

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* 11. Treatment centre:

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* 12. You or your child were diagnosed:

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* 13. What do you take to control infections?

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* 14. At what age did you start?

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

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

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* 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

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

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

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

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

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

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* 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.

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* 24. You have been instructed about the following (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

* 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.