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🌍 GLOBAL POST-SEPSIS SURVIVOR EXPERIENCE SURVEY Understanding life after sepsis

Why are we conducting this survey?

Sepsis can be a life-threatening illness, but for some people the consequences do not end when the acute illness is treated.

This international survey aims to document the experiences of people living after sepsis, including ongoing physical, cognitive, psychological and social difficulties.

The information collected will be used as patient-reported evidence supporting our campaign for greater international recognition of Post-Sepsis Syndrome (PSS) and may form part of supporting evidence for a proposal to the World Health Organization (WHO) regarding ICD-11 classification.

Participation is voluntary and anonymous.

Please do not provide your name, address, medical record number or other information that could identify you.

The survey should take approximately 5–10 minutes.

By submitting the survey, you confirm that you are providing information about your own experience and consent to your anonymous responses being used in aggregated form for advocacy, policy and health-classification purposes.

PLEASE ONLY COMPLETE ONCE
SECTION 1 — ABOUT YOUR SEPSIS

1. Which country do you live in?

2. Approximately when did you have sepsis?

3. Were you admitted to hospital because of sepsis?

4. Were you treated in an intensive care unit (ICU)?

5. Before your sepsis episode, did you have any significant ongoing health problems?

SECTION 2 — LIFE AFTER SEPSIS

6. Did you experience new or significantly worsened health problems after your sepsis?

7. Which physical problems have you experienced since your sepsis?

Select all that apply

8. Which cognitive problems have you experienced since your sepsis? Select all that apply.

9. Which psychological or emotional problems have you experienced since your sepsis?

Select all that apply.

SECTION 3 — HOW YOUR LIFE HAS CHANGED

10. Has sepsis affected your ability to work or study?

11. Has your health since sepsis affected your financial situation?


12. Has your health since sepsis affected your relationships or family life?

13. Has your health since sepsis affected your independence?

SECTION 4 — POST-SEPSIS CARE

14. Before leaving hospital after your sepsis, were you given information about possible long-term problems following sepsis?

15. Were you given a structured follow-up or rehabilitation plan after your sepsis?

16. Were you offered rehabilitation for problems you experienced after sepsis?

17. Have you experienced difficulty getting healthcare professionals to understand or recognise your ongoing problems after sepsis?

18. Has a healthcare professional ever used the term "Post-Sepsis Syndrome" when discussing your ongoing health problems with you?

SECTION 5 — YOUR EXPERIENCE

19. Overall, how much has sepsis affected your life?

20. Do you believe that some or all of your ongoing health problems are related to your previous sepsis?

Please note: This question records your experience and belief; it is not asking you to provide a medical diagnosis.

21. Do you believe people who experience significant ongoing problems after sepsis should have access to a recognised diagnosis/condition that identifies those post-sepsis problems?

Thank you

Thank you for sharing your experience.

Every response helps build a clearer picture of what life can be like after sepsis.

The purpose of this survey is to ensure that the voices of survivors are included alongside scientific and clinical evidence in discussions about Post-Sepsis Syndrome and its recognition internationally.

Sepsis survival should not mean that the survivor's ongoing health problems become invisible.

Survey responses will be analysed in aggregate. Individual responses will not be publicly identified.