Introduction

Over the years the ITP Support Association has carried out many surveys covering the subject of Immune thrombocytopenia (ITP). Many of you would have been aware that the association has now established a growing network of Local ITP Groups around the UK. Much of the feedback from local groups has covered subjects ranging from treatment at GP Surgeries or Local Hospitals to fatigue and mental health issues resulting from ITP.

We are now inviting feedback from ITP Patients about the level of care received and perception of how ITP affects daily life.  Your answers will be kept confidential – only the result summaries will be published. 

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* 1. Are you completing this survey as an ITP patient, carer or the parent of a child with ITP? (Patient / Parent of child)

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* 2. Your Hospital or ITP Specialist Centre Name:

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* 3. Did you specifically ask to be referred to this Hospital or Specialist Centre (Yes / No)

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* 4. What is the name of the doctor in charge of your care?

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* 5. Does your doctor have a treatment plan for you? (Yes / No / Don’t know)

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* 6. Have you ever had conflicting advice from different doctors in the team? (Often / Occasionally / Never)

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* 7. Is there an ITP specialist nurse in the clinic? (Yes / No / Don’t know)

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* 8. Did your GP have knowledge of ITP when you first sought advice for your symptoms?

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* 9. Are the staff at your GP Surgery, Hospital or ITP Centre friendly, polite and attentive? (Yes / No)

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* 10. Are you given time to ask questions or express concerns? (Yes / No)

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* 11. Do the team in charge of your care attempt to answer your questions (bearing in mind much is unknown in ITP) (Yes / No)

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* 12. Are you happy with your doctor’s efforts to manage your ITP?  (Yes / No)

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* 13. Have you ever been pushed into having an ITP treatment you didn’t want? (Yes / No)

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* 14. Have you ever been refused any ITP treatment you did want? (Yes / No)

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* 15. Have you been given clear instructions about any medications and know that you need to take them as prescribed. (Yes / No)

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* 16. Were you told about any possible side effects from your medication? (Yes / No)

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* 17. Have you been offered the opportunity to take part in any clinical trials or studies? (Yes / No)

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* 18. Have you been given a number to ring in case of emergencies or urgent enquiries? (Yes / No)

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* 19. Has the overall quality of care met your expectations? (Yes / No)

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* 20. Where did you hear about the ITP Support Association?

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* 21. If you were referred to an ITP Centre from your local hospital please list up to 3 reasons why you prefer the ITP Centre:-

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* 22. Do you have any suggestions for improvements that could be made at your Hospital or ITP Centre?

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* 23. 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.

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* 24. Fatigue is highlighted by Patients as one of the top issues with the condition, do you experience fatigue?

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* 25. If you answered yes to question 24, when you experience fatigue did you know your Platelet Level? If yes please tick the appropriate box

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* 26. 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

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* 27. Another issue highlighted by many who attend ITP Local Groups is the effects of ITP on a patients mental health. Has ITP had an effect on your mental wellbeing?

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* 28. If you answered yes to Q27 please give some details of the effects on your mental health?

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* 29. If you answered yes to Q27, have you received any support from a Health Care Professional for your mental health?

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* 30. Please indicate which other common symptoms you associate with your ITP?

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* 31. Please tick which medication or treatment you have received for your ITP?

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* 32. What activities are you unable to do?

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* 33. If you have been unable to do an activity (Q32) Why?

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* 34. The number of Local ITP Groups is growing but we do not yet cover the whole country, would you be interested in attending a Local Group if one could be established near you?

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* 35. If you answered Yes to Question 34 please tell us which is your county of residence. This will help us plan for future meetings.

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* 36. If you have any points you would like included in future surveys please provide the details here.

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