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ITP Patient Perception Survey 2026, this survey is supported by the ITP Support Association

Introduction

We are now inviting feedback from ITP Patients and Care Givers about the level of care received at their ITP Centre, Hospital Haematology Department or GP Surgery and their perception of how ITP affects daily life. Your answers will be kept confidential – only the result summaries will be published.

ITP Support Association - The Platelet Mission, Kimbolton Road, Bolnhurst, MK44 2EL - Registered Charity Number 1064480 - www.itpsupport.org.uk
1.Are you completing this survey as an ITP patient, carer or the parent of a child with ITP? (Patient / Parent of a Child)
2.Your Hospital, ITP Specialist Centre Name or GP Surgery Name:
3.If you indicated a Hospital or Specialist Centre did you specifically ask to be referred to this (Yes / No)
4.Does your doctor have a treatment plan for you? (Yes / No / Don’t know)
5.Have you ever had conflicting advice from different doctors in the team? (Often / Occasionally / Never)
6.Is there an ITP specialist nurse in the clinic? (Yes / No / Don’t know)
7.Did your GP have knowledge of ITP when you first sought advice for your symptoms?
8.Are the staff at your ITP Centre friendly, polite and attentive? (Yes / No)
9.Are you given time to ask questions or express concerns? (Yes / No)
10.Do the team in charge of your care attempt to answer your questions (bearing in mind much is unknown in ITP) (Yes / No)
11.Are you happy with your doctor’s efforts to manage your ITP?  (Yes / No) If No please give some detail in the comment field.
12.Have you ever been prescribed a treatment for your ITP that you felt wasn't as a result of a co-decision between yourself and your doctor? Please answer Yes or No plus any comments if you would like to add more detail.
13.Have you ever been refused any ITP treatment you did want? (Yes / No), If yes please add further detail.
14.Have you been given clear instructions about any medications and know that you need to take them as prescribed. (Yes / No)
15.Were you told about any possible side effects from your medication? (Yes / No) If Yes, please highlight what side effects?
16.Have you been offered the opportunity to take part in any clinical trials or studies? (Yes / No)
17.Have you been given a number to ring in case of emergencies or urgent enquiries? (Yes / No)
18.Has the overall quality of care met your expectations? (Yes / No)
19.Where did you hear about the ITP Support Association?
20.If you asked to be referred to an ITP Centre from your local hospital please list up to 3 reasons why you prefer the ITP Centre:-
21.Do you have any suggestions for improvements that could be made at your Hospital or ITP Centre?
22.On a scale of 1 to 10 (1 = very poor, 10 = first class)) what number would you use to rate the standard of care at your Hospital or ITP Clinical Centre.
1
2
3
4
5
6
7
8
9
10
23.If you experience fatigue as one of your symptoms, did you know what your Platelet Level was at the time? If yes please tick the appropriate box
24.Patients always highlight the effect of ITP on their Quality of Life (QOL), what are the major effects on your QOL as a result of ITP
25.When choosing your ITP treatment, to what extent did your healthcare professional ask about your lifestyle and what was important to you?
26.Once your ITP is stable on a treatment, how often does your healthcare professional discuss whether that treatment is still the most appropriate option for you?
27.When starting or changing treatment, did your healthcare professional discuss the different treatment options available to you?
28.Were the advantages and disadvantages of the different treatments explained in a way that allowed you to make an informed choice?
29.When considering an ITP treatment, how important are each of the following to you?

Rate: Not important / Slightly important / Moderately important / Very important / Extremely important
Not important
Slightly important
Moderately important
Very important
Extremely important
Controlling my platelet count
Reducing my risk of bleeding
Improving ITP related symptoms such as fatigue
Minimising side effects
Improving my overall quality of life
Fitting treatment around my daily routine
Reducing the need for hospital or clinic visits
Being able to travel more easily
Being able to participate in physical or social activities
Having confidence that my treatment is working
Other
30.The ITP Support Association has a range of Patient resources available, including the following: Please tick which one you have heard off or seen.
31.Another issue highlighted by many who attend ITP Patient Support Groups is the effects of ITP on a patients mental health. Has ITP had an effect on your mental wellbeing?
32.If you answered yes to Q31 please give some details of the effects on your mental health?
33.If you answered yes to Q31, have you received any support from a Health Care Professional for your mental health?
34.Please indicate which other common symptoms you associate with your ITP?
35.Please tick which medication or treatment you have received for your ITP?
36.Some patients have described issues with obtaining standard second line NICE approved treatments TPO/RA (Such as Romiplostim, Eltrombopag etc) in their area, have you experienced this problem? Yes or No
37.If you answered Yes to Question 36 could you give us the name of your Hospital Trust.
38.Some patients have reported that they have been offered a choice of two TPO/RA treatments, however if their first choice does not work they have to apply via a IFR (Individual Funding Request) before the second TPO/RA can be prescribed, has this happened to you? Yes or No
39.Following on from the previous question, have you ever had an IFR (Indidual Funding Request) for ITP Treatment rejected? If yes, what was the reason given?
40.As a result of your ITP please tell us what activities you feel you no longer able to do?
41.If you have been unable to do an activity as answered in Question 34, what was the main reason for your answer?
42.If you have any points you would like included in future surveys please provide the details here.
43.Please provide your Postal Code
Date of preparation: February 2024 | ITPSA Survey 0021