Introduction: You are being invited to participate in this study because you or a loved one have been diagnosed with Generalised Pustular Psoriasis (GPP). The overall aims of this research are to investigate the impact that GPP has on everyday life and to increase knowledge and awareness of GPP and what it is like to live with. This research is being conducted by researchers at The Psoriasis Association and the University of Northampton and has received ethical approval from the University of Northampton's Faculty of Health and Society Research Ethics Committee (Ref: FHSHEA000466 29/5/25) . The Psoriasis Association has received funding from Boehringer Ingelheim in the form of sponsorship to support all aspects of this research. Boehringer Ingelheim will receive a summary report of this research in advance of publication, but will have no influence over its conduct or content. The survey should take approximately 20 minutes to complete.
Please note that only people living in the UK and diagnosed with GPP or a carer/loved one of someone with a diagnosis with GPP should complete this survey.
About your data: Your participation in this research is voluntary and you may withdraw at any time during the survey by exiting the webpage. Starting the survey will be taken as your consent to participate. The results of this study may be used in Psoriasis Association reports, professional and academic publications, conference presentations, and educational materials. We will also write a report to Boehringer Ingelheim as funders of this research. No individuals will be identified, and all data will be anonymised. This study has been reviewed by an ethics committee to check that your personal data will be kept secure and used only in the way you have been told it will be. Your consent will be sought for processing your data in this way. The ethics committee has also checked that data collection is “in the public interest, scientific or historical research purposes or statistical purposes... proportionate to the aim pursued” as required by the General Data Protection Regulation (GDPR) (2016, Article 9).

Contact details: Should you wish to contact someone independent of the project at the University of Northampton, to discuss any concerns about the project, please contact katy-louise.payne@northampton.ac.uk (Ethics Committee Co-Chair).
We hope taking part in this project won't cause you discomfort but understand that sharing your experiences can be difficult. If you need support at any point, you may wish to contact one of the following free and confidential services:
Psoriasis Association – We offer information and support for people living with psoriasis. Visit www.psoriasis-association.org.uk or call 01604 251 620 (Mon–Fri, office hours).
Mind – A mental health charity offering advice and support to anyone experiencing a mental health problem. Visit www.mind.org.uk or call their Infoline on 0300 123 3393 (Mon–Fri, 9am–6pm).
Shout – if you would prefer not to talk but want some mental health support, you could text SHOUT to 85258. Shout offers confidential 24/7 text service support if you are in crisis and need immediate help.
Thank you for your support in this research. If you have any questions please contact us at research@psoriasis-assocation.org.uk

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* 1. Are you completing this survey as the person diagnosed with GPP or as the carer/loved one of someone with a diagnosis of GPP? (The questions in this survey are focused on the experience on the person who has GPP and we would be grateful if you could work with them on the answers).

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* 2. How old were you when you were diagnosed with GPP?

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* 3. What skin symptoms were you experiencing at the time of diagnosis?

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* 4. What non-skin related symptoms were you experiencing at the time of diagnosis?

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* 5. How many flares of GPP did you have before receiving a diagnosis?

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* 6. How long did it take to be seen by a dermatologist when first experiencing symptoms of GPP?

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* 7. Did you have to access private healthcare in order to get a diagnosis of GPP?

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* 8. Do you have any other diagnosed types of psoriasis? Please tick all that apply

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* 9. If you have been diagnosed with any other health condition, please specify in the box below.

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* 10. How many flares of GPP have you had?

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* 11. Are you currently experiencing a GPP flare?

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* 12. How frequent are your GPP flares?

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* 13. Have you experienced any warning signs ahead of a GPP flare?

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* 14. Please specify any triggers you have identified for a GPP flare?

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* 15. Can you describe the symptoms of a GPP flare? How does it make you feel?

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* 16. How long does it take to recover from a GPP flare? Please let us know how long it takes for you to return to normal everyday life.

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* 17. What helps to recover from a flare?

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* 18. What impact does a GPP flare have on your everyday life?
For example: your homelife and relationships, work and/or education, social life and leisure activities

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* 19. Has having GPP prevented you from doing anything?

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* 20. Has having GPP made it more difficult to do anything?

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* 21. Can you tell us how you feel between GPP flares?
For example, is it on your mind? Do you have any anxieties about another flare?

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* 22. Do you experience any symptoms between flares?

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* 23. Where have you received treatment for GPP? (Please tick all that apply)

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* 24. If you have been admitted to hospital for treatment when experiencing a flare, how long was your hospital stay? (If more than once, please give details of your longest stay in hospital)

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* 25. How far do you have to travel for your GPP treatment?

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* 26. Have you been able to access healthcare for GPP within your local area (whether as an inpatient or outpatient)?

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* 27. When accessing care for GPP flares following diagnosis, how often have you attended A&E to receive necessary treatment?

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* 28. What treatment have you received for GPP from the NHS? Please tick all that apply

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* 29. Have you received any privately funded treatment for GPP?

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* 30. Have you been involved in a clinical trial for GPP treatment?

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* 31. What do you think of the current treatment and care available for GPP on the NHS?

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* 32. When you were first diagnosed with GPP, how effective was the treatment you were prescribed?

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* 33. For subsequent flares, after GPP diagnosis, how effective was the treatment you were prescribed?

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* 34. What difference would it make to people first diagnosed with GPP if a treatment could be prescribed which helps prevent GPP flares?

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* 35. If you could receive a treatment that helps to prevent a flare of GPP, how would having access to this help? What difference could this make to your life?

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* 36. Is there anything else you would like to tell us about the impact of GPP on your everyday life?

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* 37. To better understand the experiences of people living with GPP, we would like to know a few details about the person living with GPP. This will help us to understand the experiences for different groups of people. Please note that this information will only be used for statistical purposes to see how experiences are similar or different. No information will be released that allows the identification of an individual.
What is your age (the person diagnosed with GPP)? (Please select one)

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* 38. How would you describe your gender (the person diagnosed with GPP)? (Please select one)

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* 39. Please indicate your ethnicity (for the person diagnosed with GPP):

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* 40. Where do you live (the person diagnosed with GPP)? Please give the first three digits of your postcode i.e. NN1 (These will be kept anonymous, but we will use these to identify what region you are located in).

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* 41. Which of the following best describes your current occupation (the person diagnosed with GPP)?

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* 42. What is your household composition (the person diagnosed with GPP)?

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* 43. Thank you for sharing your experiences of GPP with us. The Psoriasis Association aim to support people with all forms of psoriasis and this research will help us to highlight and present experiences of people living with GPP. If you would be willing to participate in an interview (either by telephone or online) to discuss your experiences in more detail, please indicate below.

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