Bone Marrow Transplant For Thalassaemia

If your child has had a BoneMarrow Transplant for their Thalassaemia, we would love to hear about your experience.

Who we are
We are 2 medical students working with the UKTS and the University of Leeds who would love to hear your thoughts and feelings.

Our Aims & Reassurance
We aim to gain an idea of parent experiences through this survey, to be able to create a leafelet with information you think is important to know about Bone Marrow Transplant for your child. We ensure anonymity of yourself and your child. We encourage total honesty so we can improve the resources given to parents of those with thalassaemia.

Q1) I give my consent for my anonymised data to be used *

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

Q2) Are you a patient, parent, carer, or Healthcare professional (HCP)? *

Patient	Parent	Carer	Healthcare professional (HCP)?
PatientPurchase Patient	ParentPurchase Parent	CarerPurchase Carer	Healthcare professional (HCP)?Purchase Healthcare professional (HCP)?

Q3) Please tick the box that corresponds to your condition or your loved one *

Thalassaemia	Sickle cell	Other
ThalassaemiaPurchase Thalassaemia	Sickle cellPurchase Sickle cell	OtherPurchase Other

Q4) What is your age or the age of your patient/loved one: *

Q5) How long have you or your patient/loved one been on Desferal for? *

Q6) Have you or your patient/loved one been using any other needle set other than neria or thalaset? *

The following questions are based on the neria (thalaset)

Q7) How would you rate your experience in inserting the neria thalaset needle set *

Very difficult	Difficult	Neutral	Easy	Not painful
Very difficultBuy from us again Very difficult	DifficultBuy from us again Difficult	NeutralBuy from us again Neutral	EasyBuy from us again Easy	Not painfulBuy from us again Not painful

Q8) Can you tell us about why you chose that rating?

Q9) How would you or your patient/loved one the pain at the time of insertion with the neria *

Extremely painful	Pain	Neutral	Not very painful	Not painful
Extremely painfulBuy from us again Extremely painful	PainBuy from us again Pain	NeutralBuy from us again Neutral	Not very painfulBuy from us again Not very painful	Not painfulBuy from us again Not painful

Q10) Can you tell us about your (or your patient/loved one) injection site (where you put the neria (thalaset ) needle? For example: any bruising, scarring, swelling, redness?

Q11) How would you rate the overall scarring on your (or your patient/loved one) body from using the neria needles? *

Severe scarring	Moderate amount of scarring	Neutral	Little scarring	No scarring
Severe scarringBuy from us again Severe scarring	Moderate amount of scarringBuy from us again Moderate amount of scarring	NeutralBuy from us again Neutral	Little scarringBuy from us again Little scarring	No scarringBuy from us again No scarring

Q12) How would you rate the number of painful bumps you (or your patient/loved one) have at the injection sites from using the neria needles? *

A lot of painful bumps	A moderate number of painful bumps	Neutral	A few painful bumps	No painful bumps
A lot of painful bumpsBuy from us again A lot of painful bumps	A moderate number of painful bumpsBuy from us again A moderate number of painful bumps	NeutralBuy from us again Neutral	A few painful bumpsBuy from us again A few painful bumps	No painful bumpsBuy from us again No painful bumps

Q13) Do you find yourself having to use more than one needle set for one dose Desferal? (with the previous thalaset) *

Q14) Did you or your patient/loved one experience any medication leakage with the neria thalaset? Yes / No *

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

Q15) How easy was for you or your patient/loved one to shower/bath with the new needle set (Neria thalaset)? *

Very difficult	Difficult	Neutral	Easy	Very easy
Very difficultBuy from us again Very difficult	DifficultBuy from us again Difficult	NeutralBuy from us again Neutral	EasyBuy from us again Easy	Very easyBuy from us again Very easy

Q16) Please describe your abdominal area (or your patients/loved one) after using the neria thalaset needle set?

Q18) Did having the neria thalaset needle set affect your (your loved one/patient) daily activities? *

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

Q19) How would you describe your experience of using the neria thalaset needle?

Q20) What were the positives things you found about using neria thalaset needle?

Q21) What were some of the negatives of using the neria thalaset needle set?

Q22) Are you likely to use the neria thalaset needle set if provided by the NHS? *

Q23) If you would like to make any further comments/observations on the use of the neria thalaset needle set that we haven't captured within the above, then please feel free to comment below:

Neria Guard (new needle) to be answered by individuals who have tried the new needle.

Q24) How would you rate your experience in inserting the neria guard needle set

Very difficult	Difficult	Neutral	Easy	Very easy
Very difficultBuy from us again Very difficult	DifficultBuy from us again Difficult	NeutralBuy from us again Neutral	EasyBuy from us again Easy	Very easyBuy from us again Very easy

Q25) How would you (or your patient/loved one) rate the pain at the time of insertion with the neria guard -new needle set *

Extremely painful	Painful	Neutral	Not very painful	Not painful
Extremely painfulBuy from us again Extremely painful	PainfulBuy from us again Painful	NeutralBuy from us again Neutral	Not very painfulBuy from us again Not very painful	Not painfulBuy from us again Not painful

Q26) Can you tell us about why you chose that rating?

Q27) Can you tell us about your (or your patient/loved one) injection site (where you put the neria guard -new needle set? For example: any bruising, scarring, swelling, redness?

Q28) How would you rate the overall scarring on your (or your patient/loved one) body from using the neria guard -new needle set?

Severe scarring	Moderate amount of scarring	Neutral	Little scarring	No scarring
Severe scarringBuy from us again Severe scarring	Moderate amount of scarringBuy from us again Moderate amount of scarring	NeutralBuy from us again Neutral	Little scarringBuy from us again Little scarring	No scarringBuy from us again No scarring

Q29) How would you rate the number of painful bumps you (or your patient/loved one) have at the injection sites from using the neria guard -new needle set?

A lot of painful bumps	Painful bumps	Neutral	A few painful bumps	No painful bumps
A lot of painful bumpsBuy from us again A lot of painful bumps	Painful bumpsBuy from us again Painful bumps	NeutralBuy from us again Neutral	A few painful bumpsBuy from us again A few painful bumps	No painful bumpsBuy from us again No painful bumps

Q30) Do you find yourself having to use more than one needle set for one dose Desferal?

Q31) How would you rate your (or the patient/your loved one’s) experience when moving around with the neria guard ( new ) needle set?

Severely affected	Moderately affected	Neutral	Slightly affected	Not affected
Severely affectedBuy from us again Severely affected	Moderately affectedBuy from us again Moderately affected	NeutralBuy from us again Neutral	Slightly affectedBuy from us again Slightly affected	Not affectedBuy from us again Not affected

Q32) How would you rate your (or the patient/your loved one’s) experience when lying down with the neria guard ( new ) needle set? *

Extreme Discomfort	Moderate Discomfort	Neutral	Comfortable	Very comfortable
Extreme DiscomfortBuy from us again Extreme Discomfort	Moderate DiscomfortBuy from us again Moderate Discomfort	NeutralBuy from us again Neutral	ComfortableBuy from us again Comfortable	Very comfortableBuy from us again Very comfortable

Q33) How would you rate your (or the patient/your loved one’s) experience when sitting down with the neria guard ( new ) needle set?

Extreme Discomfort	Moderate Discomfort	Neutral	Comfortable	Very comfortable
Extreme DiscomfortBuy from us again Extreme Discomfort	Moderate DiscomfortBuy from us again Moderate Discomfort	NeutralBuy from us again Neutral	ComfortableBuy from us again Comfortable	Very comfortableBuy from us again Very comfortable

Q34) Did you or your patient/loved one experience any medication leakage with the neria guard (new needle)?

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

Q35) How easy was for you or your patient/loved one to shower/bath with the Neria guard new needle set?

Very difficult	Difficult	Neutral	Very easy	Easy
Very difficultBuy from us again Very difficult	DifficultBuy from us again Difficult	NeutralBuy from us again Neutral	Very easyBuy from us again Very easy	EasyBuy from us again Easy

Q37) Please describe your abdominal area (or your patients/loved one) after using the neria guard (new) needle set?

Q38) Did having the new needle set (Neria Guard) affect your (your loved one/patient) daily activities?

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

Q39) How would you describe your experience of using the new neria guard needle?

Q40) What were the positives things you found about using neria guard?

Q41) What were some of the negatives of using the neria guard?

Q42) Are you likely to use the neria guard needles if provided by the NHS?

Q43) If you would like to make any further comments/observations on the use of the new needle set (Neria Guard), that we haven't captured within the above, then please feel free to comment below: