QUESTIONNAIRE A: Thalassaemia Patient Questionnaire:Quality of services available for the treatment of thalassaemia across the world Patients' views on the quality of services available for thalassaemia treatment Section 1 - About OK 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. OK Question Title * 1. Please provide the following information: Age (in years): I live in (country of residence): Ethnic origin (e.g., African, Asian, European, Middle-Eastern, Latin American, North American, Mixed race - please specify) OK Question Title * 2. I am (e.g., a patient; a parent; other-please specify): Patient Parent Other (please specify) OK Question Title * 3. What is your gender? Male Female OK Question Title * 4. What is your marital status (e.g., married; single; cohabiting; divorced): Married Single Cohabitating Divorced Other (please specify) OK Question Title * 5. Do you have children? Yes No If yes, how many children do you have? OK Question Title * 6. What is your education level? university graduate student/school playshool/kindergarten Other (please specify) OK Question Title * 7. Do you currently work? working part time working full time not working by choice not working because I am unable to find a job OK Question Title * 8. Are you a member of a patient’s association? (Yes/ No/ Other (Please specify) Yes No Other (please specify) OK Medical information OK Question Title * 9. If you are a patient, what is your diagnosis? If you are a parent, what is the diagnosis of your child? Beta Thalassaemia major Beta Thalassaemia intermedia HbH disease Other (please specify) OK Question Title * 10. At what age did you start receiving iron chelation therapy? 1-4 years old 4-6 years old 6-8 years old 8-10 years old Later Other (please specify) OK Question Title * 11. How is your current transfusion regime? I am not transfused I am regularly transfused I am occasionally transfused Comments: OK Question Title * 12. If regularly transfused, what is the usual Hb level pre-transfusion? Less than 7mg/dl 7-8mg/dl 8-9mg/dl 9-10mg/dl 10-11mg/dl Over 11mg/dl Comments OK Question Title * 13. Where do you receive your treatment at? Country: City: OK Section 2- Quality of the services usedPlease answer the following questions to give us a clear indication of the quality of treatment you are receiving. OK Question Title * 14. Are blood supplies adequate at the centre you are transfused or are there delays in transfusion? No delays Occasional delays Delays are frequent so my Hb falls very low Comments OK Question Title * 15. What kind of blood filtration is available at the clinic? Pre-storage Bedside None I don't know Other (please specify) OK Question Title * 16. What chelation drugs do you use? Desferrioxamine (Desferal) Deferiprone (Ferriprox / L1) Deferasirox (Exjade) Combination (please specify) OK Question Title * 17. How often do you receive chelation? I take it regularly as prescribed I do not take it regularly I don't receive iron chelation therapy Please explain OK Question Title * 18. How available are iron chelation drugs to you and at what dose? I always receive the chelation drugs in the quantity that I need them (at the right dose, continuous availability) I receive a lower dose of chelation drugs than prescribed because of there isn't enough quantity (poor supplies) I receive chelation drugs but not all the time because of interruptions in supply Comments OK Question Title * 19. How often is your ferritin level measured? Every month Every two months Every three months Every six months Every twelve months Never Other (please specify) OK Question Title * 20. How often is cardiac iron measured by T2*? Twice a year Annually/ Every year Every 2 years Rarely Never Other (please specify) OK Question Title * 21. Who pays for your treatment? (Tick all that apply) Myself/my family Health insurance (private): mine Health insurance (private): my employer's State-provided free healthcare State-provided, partly free Other model of payment Please describe OK Question Title * 22. What specialist(s) do you visit, in addition to your main treating doctor? Internal medicine Haematologist Paediatrician Heart specialist Endocrinologist Diabetologist (If separate from endocrinologist) Psychologist Liver specialist Nephrologist OK Question Title * 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) Pathologist (General Practitioner) Every 15 days Pathologist (General Practitioner) Every 30 days Pathologist (General Practitioner) Every 6 months Pathologist (General Practitioner) Every 1 year Pathologist (General Practitioner) Every 2 years Haematologist Haematologist Every 15 days Haematologist Every 30 days Haematologist Every 6 months Haematologist Every 1 year Haematologist Every 2 years Paediatrician Paediatrician Every 15 days Paediatrician Every 30 days Paediatrician Every 6 months Paediatrician Every 1 year Paediatrician Every 2 years Heart specialist Heart specialist Every 15 days Heart specialist Every 30 days Heart specialist Every 6 months Heart specialist Every 1 year Heart specialist Every 2 years Endocrinologist Endocrinologist Every 15 days Endocrinologist Every 30 days Endocrinologist Every 6 months Endocrinologist Every 1 year Endocrinologist Every 2 years Diabetologist (If separate from endocrinologist) Diabetologist (If separate from endocrinologist) Every 15 days Diabetologist (If separate from endocrinologist) Every 30 days Diabetologist (If separate from endocrinologist) Every 6 months Diabetologist (If separate from endocrinologist) Every 1 year Diabetologist (If separate from endocrinologist) Every 2 years Psychologist Psychologist Every 15 days Psychologist Every 30 days Psychologist Every 6 months Psychologist Every 1 year Psychologist Every 2 years Liver specialist Liver specialist Every 15 days Liver specialist Every 30 days Liver specialist Every 6 months Liver specialist Every 1 year Liver specialist Every 2 years Nephrologist Nephrologist Every 15 days Nephrologist Every 30 days Nephrologist Every 6 months Nephrologist Every 1 year Nephrologist Every 2 years OK Question Title * 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 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 OK Question Title * 25. Where are you transfused? Haematology day unit Children’s ward Adult Haematology ward Accident & Emergency Specialised Haemoglobinopathy unit Home Other (please specify) OK Question Title * 26. When are you usually transfused? Morning Afternoon Evening Overnight Weekend Comments OK Question Title * 27. 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) OK Question Title * 28. Do you think the treatment that you are receiving is correct and complete? Yes No Not sure Please describe OK Question Title * 29. 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) OK Question Title * 30. Do you have an accredited MRI centre for iron overload? Yes No I don't know Comments OK Question Title * 31. If MRI is used to measure your Liver Iron Concentration, with what methodology is it used? T2* R2 (Ferriscan) I don't know OK Question Title * 32. How is your liver iron measured? Liver biopsy MRI Not measured at all Comments OK Question Title * 33. 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 OK Question Title * 34. How many days per year do you lose from education or work because of having to attend treatment for thalassaemia? None 1-5 days 6-10 days 11-15 days 16 or more days OK Question Title * 35. How easy do you find it to talk to friends and colleagues about your condition? Very easy Easy Difficult Very difficult/impossible Comments OK Question Title * 36. What is your latest Liver Iron Concentration? (If there is difficulty to answer, please ask your doctor) Less than 7 mg/kg of dry weight 7-15 mg/kg of dry weight Above 15 mg/kg of dry weight I am not sure I don't know OK Question Title * 37. Your current ferritin level is: <500ng/ml 500-1000ng/ml 1000-2000ng/ml 2000-4000ng/ml >4000ng/ml I don't know OK Question Title * 38. What is your latest T2* level? Under 6ms 6-10ms 10-20ms Over 20ms OK Question Title * 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? 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 OK 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 OK NEXT