UKTS Adult Patient Experience Survey

Please enable JavaScript in your browser to complete this form.

Q1. What is your gender?

Female	Male	non-Binary	Prefer not to say
FemaleBuy from us again Female	MaleBuy from us again Male	non-BinaryBuy from us again non-Binary	Prefer not to sayBuy from us again Prefer not to say

Q2. What is your age?

18 -30	31-45	46-55	55 and above
18 -30Purchase 18 -30	31-45Purchase 31-45	46-55Purchase 46-55	55 and abovePurchase 55 and above

Q3. What type of thalassaemia do you have?

Q4. Are you aware of the health care staff involved in your care and know how to contact them (excluding your GP)?

Yes	No
YesPurchase Yes	NoPurchase No

Q5. Are you aware of the community services and know how to contact them?

Yes	No
YesPurchase Yes	NoPurchase No

Q6. Do you feel you have adequate support and information available at your unit on managing your thalassaemia?

Yes	No
YesPurchase Yes	NoPurchase No

Q7.What type of information would you find helpful?

Q8. Do you use the internet to learn more about thalassaemia?

Yes	No
YesPurchase Yes	NoPurchase No	Purchase

Q9. How do you rate the level of support you receive from your thalassaemia team?

Good	Fair	Poor
GoodPurchase Good	FairPurchase Fair	PoorPurchase Poor

Q10. Are you aware of the signs/ symptoms of infection, pain, sepsis…etc and when to seek emergency care?

Yes	No
YesPurchase Yes	NoPurchase No

Q11. Who would you contact in a thalassaemia related issue/ emergency during working hours (Monday- Friday 9am-5pm) ?

Q12. Can you tell us who would contact for vaccination and travel advice?

Q13. Do you know who would you contact for information on contraception/ sexual health advice?

Q14. Do you receive copies of your thalassaemia related medical letters sent to your GP?

Yes	No
YesPurchase Yes	NoPurchase No

Q15. Do your thalassaemia team discuss potential clinical trials with you?

Yes	No
YesPurchase Yes	NoPurchase No

Q16. If you had to provide comments/ feedback or make a complaint about the care you receive at your hospital, who would you speak to?

Q17. Do you feel your thalassaemia team has a good understanding/ specialist knowledge about your condition?

Yes	No
YesPurchase Yes	NoPurchase No

Q18. Do you feel you are being heard or listened to when you voice your worries or concerns?

Yes	No
YesPurchase Yes	NoPurchase No

Q19. Do you have confidence in your thalassaemia team?

Yes	No
YesPurchase Yes	NoPurchase No

Q20. Were you treated with dignity and respect by the staff looking after you?

Yes, always	Yes, sometimes	No
Yes, alwaysPurchase Yes, always	Yes, sometimesPurchase Yes, sometimes	NoPurchase No

Q21. Do you have any more comments about your haematology team?

Blood Transfusions

Q22. Thinking about your most recent transfusion, how long after your initial appointment time, did your blood transfusion start?

Seen on time/early	Within 15 min	Within 30 min	Within 45 min	Over 60 min
Seen on time/earlyPurchase Seen on time/early	Within 15 minPurchase Within 15 min	Within 30 minPurchase Within 30 min	Within 45 minPurchase Within 45 min	Over 60 minPurchase Over 60 min

Q23. How would you rate the care during your blood transfusion and why you chose this rating?

Bad care	Moderate care	Good care	Very good care	Exceptional care
Bad carePurchase Bad care	Moderate carePurchase Moderate care	Good carePurchase Good care	Very good carePurchase Very good care	Exceptional carePurchase Exceptional care

Q24. Would you like to extend opening hours for your blood transfusion?

Once a year	Every two years	Never	Other (please specify)
Once a yearPurchase Once a year	Every two yearsPurchase Every two years	NeverPurchase Never	Other (please specify)Purchase Other (please specify)

Please specify - Opening hours

If other is selected please specify

Q25. Is the unit well equipped for your needs (chairs comfortable etc)?

Yes	No
YesPurchase Yes	NoPurchase No

If no, please can you tell us what be more suitable?

Specialist Care and Monitoring

Q26. How often are you reviewed by your haematology team?

Twice a year	Once a year	Once every two years	Other (please specify)
Twice a yearPurchase Twice a year	Once a yearPurchase Once a year	Once every two yearsPurchase Once every two years	Other (please specify)Purchase Other (please specify)

Please specify - reviewed by haematology team

If other is selected please specify

Q27. How often does your thalassaemia team do regular blood tests to monitor your iron levels, hormone levels or any side effects from your iron chelation medication?

Every month	Every 3 months	Every year	I don’t know what blood test are taken
Every monthPurchase Every month	Every 3 monthsPurchase Every 3 months	Every yearPurchase Every year	I don’t know what blood test are takenPurchase I don’t know what blood test are taken

Q28. How often do you have MRI of your heart and liver?

Once a year	Every 2 years	Never
Once a yearPurchase Once a year	Every 2 yearsPurchase Every 2 years	NeverPurchase Never

Q29. How often do you see a doctor who specialises in hormones/ bone health/ reproductive health?

Once a year	Every two years	Never	Other (please specify)
Once a yearPurchase Once a year	Every two yearsPurchase Every two years	NeverPurchase Never	Other (please specify)Purchase Other (please specify)

Please specify - hormones

If other is selected please specify

Q30. How often do you have an appointment with an eye doctor in hospital?

Once a year	Every two years	Never	Other (please specify)
Once a yearPurchase Once a year	Every two yearsPurchase Every two years	NeverPurchase Never	Other (please specify)Purchase Other (please specify)

Please specify - eye doctor

If other is selected please specify

Q31. How often do you have an appointment to check your hearing in hospital?

Once a year	Every two years	Never	Other (please specify)
Once a yearPurchase Once a year	Every two yearsPurchase Every two years	NeverPurchase Never	Other (please specify)Purchase Other (please specify)

Please specify - hearing

If other is selected please specify

Q32. Do you think you are given enough information about how you are responding to iron chelation medication and other treatment?

Yes	No
YesPurchase Yes	NoPurchase No

Q33. Were you involved in the discussions as much as you wanted to be about what iron chelation medication would be right for you?

Yes	No
YesPurchase Yes	NoPurchase No

Q34. Did any member of staff tell you about iron chelation medication side effects to look out for?

Yes	No
YesPurchase Yes	NoPurchase No

Q35. Did any member of staff tell you about the risks associated with iron chelation medication when conceiving / during pregnancy?

Yes	No
YesPurchase Yes	NoPurchase No

Q36. Do you feel you know enough and are well supported to cope with your iron chelation therapy?

Yes	No
YesPurchase Yes	NoPurchase No

Q37. Do you receive any of your iron chelation medication from a delivery company?

Yes	No (please go to question 39)
YesPurchase Yes	No (please go to question 39)Purchase No (please go to question 39)

Q38. How would you rate their service?

Poor	Fair	Good	Very good	Exceptionally good
PoorPurchase Poor	FairPurchase Fair	GoodPurchase Good	Very goodPurchase Very good	Exceptionally goodPurchase Exceptionally good

Q39. For those currently using desferal infusors, can you tell us about your experience- the good and the bad? (What infusor do you use and how well is it working?)

Clinic Appointments

Q40. Can you rate your experience of making clinic appointments?

Extremely difficult	Very difficult	Difficult	Fair	Easy
Extremely difficultPurchase Extremely difficult	Very difficultPurchase Very difficult	DifficultPurchase Difficult	FairPurchase Fair	EasyPurchase Easy

Q41. Did you have enough time to discuss your thalassaemia needs with your doctor?

Yes	No
YesPurchase Yes	NoPurchase No

Q42. Did your doctor explain reasons for any new treatments or investigations in a way you could understand?

Yes	No	To some extent
YesPurchase Yes	NoPurchase No	To some extentPurchase To some extent

Q43. Were you involved in decisions about your care as much as your wanted to be?

Yes	No
YesPurchase Yes	NoPurchase No

Q44. Did you leave your appointment with a treatment plan you were comfortable with?

Yes	No
YesPurchase Yes	NoPurchase No

Q45. Do you feel your thalassaemia team refer you to other specialists in a timely manner?

Yes	No
YesPurchase Yes	NoPurchase No

Accident and Emergency

Q46. In the last 12 months, how many times have you visited the emergency department?

Once	2-3 times	4-7 times	Over 8 times	Never (if never please go to Q50
OncePurchase Once	2-3 timesPurchase 2-3 times	4-7 timesPurchase 4-7 times	Over 8 timesPurchase Over 8 times	Never (if never please go to Q50Purchase Never (if never please go to Q50

Q47. How would you rate your experience?

Poor	Fair	Good	Very good	Exceptionally good
PoorPurchase Poor	FairPurchase Fair	GoodPurchase Good	Very goodPurchase Very good	Exceptionally goodPurchase Exceptionally good

Why did you chose that rating?

Q48. Did the health care professionals treating you in A&E have any knowledge of thalassaemia?

Yes	No
YesPurchase Yes	NoPurchase No

Q49. Do you feel confident going back to A&E?

Yes	No
YesPurchase Yes	NoPurchase No

Inpatient/ ward care

Q50. In the last 12 months have you ever been admitted to an inpatient ward?

Yes	No (if No please go to Q54)
YesPurchase Yes	No (if No please go to Q54)Purchase No (if No please go to Q54)

Q51.How would you rate your care on the ward?

Poor	Fair	Good	Very good	Exceptionally good
PoorPurchase Poor	FairPurchase Fair	GoodPurchase Good	Very goodPurchase Very good	Exceptionally goodPurchase Exceptionally good

Q52.Do you feel the staff on the wards were adequately trained to look after you?

Yes	No
YesPurchase Yes	NoPurchase No

Q53. Would you like to leave any additional comments about your experience being an inpatient?

Support

Q55. Can you name two things you like about the thalassaemia services you receive?

Q56. Can you name two things about the thalassaemia services you’d like improved or changed over the next two years?

Q57. If you had to design future thalassaemia services, what would you hope decision makers kept in mind?

Q58. What hospital are you treated at?

UKTS Adult Patient Experience Survey

Blood Transfusions

Specialist Care and Monitoring

Clinic Appointments

Accident and Emergency

Inpatient/ ward care

Support

Thank you for participating in this survey!