UKTS Parent- Carer Experience Survey

Q1. Are you a? *

Parent	Carer	Other
ParentBuy from us again Parent	CarerBuy from us again Carer	OtherBuy from us again Other

Q2. What is your gender? *

Female	Male	Non-Binary	Prefer not to say
FemalePurchase Female	MalePurchase Male	Non-BinaryPurchase Non-Binary	Prefer not to sayPurchase Prefer not to say

Q3. What is the gender of the patient with thalassaemia? *

Female	Male	Non-Binary	Prefer not to say
FemalePurchase Female	MalePurchase Male	Non-BinaryPurchase Non-Binary	Prefer not to sayPurchase Prefer not to say

Q4. How old is the patient with thalassaemia? *

0-5	6-10	11-15	16-18	18-25	26-40	40+
0-5Purchase 0-5	6-10Purchase 6-10	11-15Purchase 11-15	16-18Purchase 16-18	18-25Purchase 18-25	26-40Purchase 26-40	40+Purchase 40+

Q5. What type of thalassaemia does the patient have? *

Q6. Did members of staff (treating the person with thalassaemia) give you enough information about thalassaemia in a way that you could understand? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q7. How hard did you find coming to terms with your child/ loved one’s diagnosis of diagnosis? (Please tick all that apply)

I have not really come to terms with it
Very hard – I have been feeling very lonely
Hard but I had family and friend’s support
Hard but my religious beliefs helped me
Hard but my knowledge of the disease and treatments helped me
Not very hard due to my close relationships with family and friends
Not very hard due to my strong religious beliefs
Not very hard due to the information made available by medical professionals

Q8. Are you aware of the health care staff involved in the patient’s thalassaemia care and know how to contact them (excluding GPs)? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q9. Are you aware of the community services and know how to contact them? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q10. Do you feel you have adequate support and information available at the patient’s unit on managing thalassaemia? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q.11 What type of information would you find helpful?

Q12. How do you rate the level of support that is given by the hospital to patients with thalassaemia and their families or carers? *

Good	Fair	Poor
GoodBuy from us again Good	FairBuy from us again Fair	PoorBuy from us again Poor

Q13. Are you aware of the signs/symptoms of infection, pain, sepsis…etc and when to seek emergency care? *

Good	Fair
GoodBuy from us again Good	FairBuy from us again Fair

Q14. Who would you contact in a thalassaemia related issue/ emergency during working hours (Monday- Friday 9am-5pm)?

Q15. Who would you contact in a thalassaemia related issue/ emergency during non-working hours (evenings, weekends and bank holidays)?

Q16. Do you use the internet to learn more about thalassaemia? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q17. Do you receive copies of the patient’s medical letters sent to their GP? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q18. Do the patient’s thalassaemia team discuss potential clinical trials with you? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q19. If you had to provide comments/ feedback or make a complaint about the care the patient received at hospital, who would you speak to?

Q20. Do you feel the thalassaemia team has a good understanding/ specialist knowledge about the patient’s condition? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q21. Do you feel you are being heard or listened to when you voice your worries or concerns? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q22. Were both you and the patient treated with dignity and respect by the thalassaemia team? *

Yes, always	Yes, sometimes	No
Yes, alwaysBuy from us again Yes, always	Yes, sometimesBuy from us again Yes, sometimes	NoBuy from us again No

Q23. Do you have confidence in the thalassaemia team? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q24. Is the unit well equipped for the patient’s needs (chairs comfortable etc)? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q25. Do you have any more comments about your haematology team/ unit?

Blood Transfusions

Q26. Thinking about the patient’s most recent transfusion, how long after the initial appointment time, did their blood transfusion start? *

Seen on time/ early	Within 15 mins	Within 30 mins	Within 45 mins	Over 60 mins
Seen on time/ earlyBuy from us again Seen on time/ early	Within 15 minsBuy from us again Within 15 mins	Within 30 minsBuy from us again Within 30 mins	Within 45 minsBuy from us again Within 45 mins	Over 60 minsBuy from us again Over 60 mins

Q27. How would you rate the care during the patient’s blood transfusion and why you chose this rating? *

Bad care	Moderate care	Good care	very good care	Exceptional care
Bad careBuy from us again Bad care	Moderate careBuy from us again Moderate care	Good careBuy from us again Good care	very good careBuy from us again very good care	Exceptional careBuy from us again Exceptional care

Q28. Would you like to extend opening hours for blood transfusion? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Specialist Care and Monitoring

Q29. How often the patient is reviewed by their haematology team? *

Twice a year	Once a year	Once every two years	Other (please specify)
Twice a yearBuy from us again Twice a year	Once a yearBuy from us again Once a year	Once every two yearsBuy from us again Once every two years	Other (please specify)Buy from us again Other (please specify)

Other comments for Q29

Q30. How often does the patient do regular blood tests to monitor their iron levels, hormone levels or any side effects from the iron chelation medication? *

Every month	Every 3 months	Once a year	I don’t know blood test are taken
Every monthBuy from us again Every month	Every 3 monthsBuy from us again Every 3 months	Once a yearBuy from us again Once a year	I don’t know blood test are takenBuy from us again I don’t know blood test are taken

Q31. How often does the patient have a MRI of their heart and liver? *

Once a year	Every two years	Never	Other (please specify)
Once a yearBuy from us again Once a year	Every two yearsBuy from us again Every two years	NeverBuy from us again Never	Other (please specify)Buy from us again Other (please specify)

Other comments for Q31

Q32. How often does the patient see a doctor who specialises in hormones/ bone health/ reproductive health? *

Once a year	Every two years	Never	Other (please specify)
Once a yearBuy from us again Once a year	Every two yearsBuy from us again Every two years	NeverBuy from us again Never	Other (please specify)Buy from us again Other (please specify)

Other comments for Q32

Q33. How often does the patient have an appointment with an eye doctor in hospital? *

Once a year	Every two years	Never	Other (please specify)
Once a yearBuy from us again Once a year	Every two yearsBuy from us again Every two years	NeverBuy from us again Never	Other (please specify)Buy from us again Other (please specify)

Other comments for Q33

Q34. How often does the patient have an appointment to check your hearing in hospital? *

Once a year	Every two years	Never	Other (please specify)
Once a yearBuy from us again Once a year	Every two yearsBuy from us again Every two years	NeverBuy from us again Never	Other (please specify)Buy from us again Other (please specify)

Other comments for Q34

Q35. Do you think you are given enough information about the patient’s possible response to iron chelation medication and other treatment? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q36. Did any member of staff tell you about iron chelation medication side effects to look out for? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q37. Have you been involved in the decision as much as you wanted about what iron chelation medication the patient should be on? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q38. Do you feel you know enough about iron chelation therapy? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q39. Do you receive any of the iron chelation medication (for the patient) from delivery companies? *

Yes	No (please go to Q42)
YesBuy from us again Yes	No (please go to Q42)Buy from us again No (please go to Q42)

Q40. How would you rate their service? *

Poor	Fair	Good	Very Good	Exceptionally good
PoorBuy from us again Poor	FairBuy from us again Fair	GoodBuy from us again Good	Very GoodBuy from us again Very Good	Exceptionally goodBuy from us again Exceptionally good

Q41. 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?)

Thalassaemia Clinic Appointments

Q42. Can you rate your experience of making clinic appointments? *

Very difficult	Difficult	Fair	Easy
Very difficultBuy from us again Very difficult	DifficultBuy from us again Difficult	FairBuy from us again Fair	EasyBuy from us again Easy

Q43. Did you have enough time to discuss the patient’s thalassaemia care with their doctor? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q44. Did the patient’s doctor explain reasons for any new treatments or investigations in a way you could understand? *

Yes	No	To some extent
YesBuy from us again Yes	NoBuy from us again No	To some extentBuy from us again To some extent

Q45. Do you feel the patient is being referred to specialists outside of their thalassaemia team in a timely manner? *

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Accident and Emergency

Q46. In the last 12 months, how many times has the patient visited the emergency department? *

Once	2- 3 times	4-7 times	Over 8 times	Never (please go to question 56)
OnceBuy from us again Once	2- 3 timesBuy from us again 2- 3 times	4-7 timesBuy from us again 4-7 times	Over 8 timesBuy from us again Over 8 times	Never (please go to question 56)Buy from us again Never (please go to question 56)

Q47. How would you rate the experience? *

Poor	Fair	Good	Very good	Exceptionally good
PoorBuy from us again Poor	FairBuy from us again Fair	GoodBuy from us again Good	Very goodBuy from us again Very good	Exceptionally goodBuy from us again Exceptionally good

Please tell us why you chose that rating?

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

Yes	No
YesBuy from us again Yes	NoBuy from us again No

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

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Inpatient care / Ward

Q50. In the last 12 months as the patient been admitted to an inpatient ward? *

Yes	No (Please go to Q54)
YesBuy from us again Yes	No (Please go to Q54)Buy from us again No (Please go to Q54)

Q51. How would you rate the patient’s care on the ward? *

Poor	Fair	Good	Very good	Exceptionally good
PoorBuy from us again Poor	FairBuy from us again Fair	GoodBuy from us again Good	Very goodBuy from us again Very good	Exceptionally goodBuy from us again Exceptionally good

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

Yes	No
YesBuy from us again Yes	NoBuy from us again No

Q53. Would you like to leave any additional comments?

Support

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

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

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

Q57. Which hospital is your child/loved one treated at? *

Thank you for participating in this survey!

It is important that both dentists and people with thalassaemia understand the implications of this condition on oral and dental health. The key to management is the prevention of oral disease. It is essential to visit a dentist regularly, so that any problems can be detected and managed early.