Needle set survey

for Patients / Parents/ Carers / Health Care Professionals

Hello, we are carrying out a survey to capture your (the patient) experience of using the neria (thalaset) needles and for those who have received samples of a newer version. We have received many reports of issues with the current “neria thalasets” and as result would like to capture more data on this. Your participation in this is survey is completely voluntary and your data will be anonymised.

What do we intend to do with the data collected?

The data collected will be turned into a report which will then be presented to the four Haemoglobinopathy Coordinating Centres for thalassaemia and to the specialised commissioning team. A copy of this report will also be available on our website.

We know that you may have filled several of these surveys before, but your answers will provide valuable feedback o and will help us to know what is working well and what needs improving in your current service.

We are committed to ensuring you receive the best care and overall experience, so we welcome all your comments. Completing the full survey should take around 10 minutes. We greatly appreciate your time and involvement.

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) Have you or your patient/loved one been using any other needle set prior to the new needle set (Neria Guard)? *

Q6) How easy and simple was it to insert the new needle set compared to previous 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

Q7) How long have you or your patient/loved one been on Desferal for? *

Q8) How do you or your patient/loved one feel about the previous thalaset?

Q9) How do you or your patient/loved one feel about the new needle set?

Q10) On insertion, on a scale of 1 – 10, how would you or your patient/loved one quantify pain with previous thalaset? (1 – not painful 10 – extremely painful)

Pain Level: 1

Q11) On insertion, on a scale of 1 – 10, how would you or your patient/loved one quantify pain with NEW needle set (Neria Guard)?

Pain Level: 1

Q12a) Can you describe your (or your patient/loved one) injection site using the old thalaset needs. Part b) Only applicable if you received a trial set- Can you describe the injection site after using the new needle set (Neria Guard)?

12b) Only applicable if you received a trial set- Can you describe the injection site after using the new needle set (Neria Guard)? (copy)

Q13) Did you have difficulty inserting the needle previously? In one sitting how many needles do you normally use? (with the previous thalaset)

Q14) Do you find yourself having to use more than one needle set for one dose Desferal? (with the previous thalaset)

Q15) How comfortable did you or the patient/your loved one feel when moving with the NEW needle set? *

Uncomfortable	Neutral	Comfortable	Very Comfortable
UncomfortableBuy from us again Uncomfortable	NeutralBuy from us again Neutral	ComfortableBuy from us again Comfortable	Very ComfortableBuy from us again Very Comfortable

Q16) How comfortable did you or the patient/your loved one feel when lying down with the NEW needle set? *

Uncomfortable	Neutral	Comfortable	Very Comfortable
UncomfortableBuy from us again Uncomfortable	NeutralBuy from us again Neutral	ComfortableBuy from us again Comfortable	Very ComfortableBuy from us again Very Comfortable

Q17) How comfortable did you or the patient/your loved one feel when sitting down with the NEW needle set? *

Uncomfortable	Neutral	Comfortable	Very Comfortable
UncomfortableBuy from us again Uncomfortable	NeutralBuy from us again Neutral	ComfortableBuy from us again Comfortable	Very ComfortableBuy from us again Very Comfortable

Q18) Did you or your patient/loved one experience any medication leakage with the previous thalaset? Yes / No *

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

Q19) Did you or your patient/loved one experience any medication leakage with the NEW needle set? Yes / No *

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

Q20) How gentle did you or your patient/loved one find the dressing securing the NEW needle set? *

Uncomfortable	Neutral	Comfortable	Very Comfortable
UncomfortableBuy from us again Uncomfortable	NeutralBuy from us again Neutral	ComfortableBuy from us again Comfortable	Very ComfortableBuy from us again Very Comfortable

Q21) How easy was for you or your patient/loved one to shower/bath with the NEW needle set (Neria Guard)? *

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

Q22) Could you or your patient/loved one have showered with the previous thalaset? Yes / No *

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

Q23) Please describe your abdominal area (or your patients/loved one) after using the previous thalaset and after using the NEW one?

Q24) Did having the NEW needle set (Neria Guard) in place allow for you to carry on with daily activities of living?

Q25) What was the biggest life impact for you or your patient/loved with the NEW needle set?

Q26) If you are a Healthcare professional, how likely would you be to use the NEW needle set (Neria Guard) moving forward with your patients? *

Not likely	Likely	Very likely
Not likelyBuy from us again Not likely	LikelyBuy from us again Likely	Very likelyBuy from us again Very likely

Q28) 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:

Needle set survey

for Patients / Parents/ Carers / Health Care Professionals

Thank you for participating in this survey!