What you get is what you ask for - a specific follow-up questionnaire - Johan Malmgren - SSAI2017
Download as PPTX, PDF0 likes61 views
The document discusses the development of a follow-up questionnaire specific to ICU survivors to better assess their health-related quality of life. A qualitative phase involved interviews with 30 survivors leading to the identification of various health challenges post-ICU, which are being quantitatively analyzed in an ongoing study with 600 participants. The research aims to validate an ICU-specific questionnaire to aid in long-term follow-up and improve insights into survivors' recovery needs.
![The Problem
“[…] there is a strong case for the development of a critical care-specific HRQL instrument […]
This would ensure that we do not underestimate the burden of disability borne by these survivors.”](https://image.slidesharecdn.com/15j6lkfqbph9vit6sauw-signature-8173cdb1901b6b2a92f7345b405fb7be87b1fecb83bbc56c9eadcc8941de1aa8-poli-171101062227/85/What-you-get-is-what-you-ask-for-a-specific-follow-up-questionnaire-Johan-Malmgren-SSAI2017-7-320.jpg)
What you get is what you ask for - a specific follow-up questionnaire - Johan Malmgren - SSAI2017
- 1. D E V E L O P M E N T O F A N I C U - S P E C I F I C F O L L O W - U P Q U E S T I O N N A I R E Malmgren J Waldenström A-C Rylander C Lundin S Sahlgrenska University Hospital
- 5. Houston, we have a problem…
- 6. The Problem SF-36 EQ-5D Physical status Emotional/psychological status Cognitive status Activities and behavior Physical zone of comfort Interactions/relationships Perceptions of responses to life Personality Appearance Clothing Place of residence Finances Adapted from Lim et al; J Crit Care; 2016
- 7. The Problem “[…] there is a strong case for the development of a critical care-specific HRQL instrument […] This would ensure that we do not underestimate the burden of disability borne by these survivors.”
- 8. W H A T D I D W E D O ?
- 9. Method – Qualitative Phase Interviews with 30 ICU survivors • Semi-structured about every-day issues • Issues transformed into separate questions • Further validated with additional ICU survivors and expertise
- 10. W H A T D I D W E F I N D ?
- 11. Method – Qualitative Phase 1. Cognitive function 2. Fatigue 3. Physical health 4. Mental health 5. ADL 6. Return-to-work & economy 7. Sexuality & intimacy 8. Urinary tract symptoms 9. Gastrointestinal symptoms 10. Sensory functions 11. Pain 12. Sleep 13. Appetite/alcohol 14. The questionnaire itself 15. Post-ICU clinic
- 13. W H A T D O W E D O R I G H T N O W ?
- 14. Method – Quantitative Phase April 2016 – Ongoing 600 ICU survivors • Discharged 6mo – 3y ago • 3 general ICUs 300 controls • Randomized from general population • Matched for age & sex Current response rate 80%
- 15. Method – Quantitative Phase April 2016 – Ongoing 600 ICU survivors • Discharged 6mo – 3y ago • 3 general ICUs 300 controls • Randomized from general population • Matched for age & sex Current response rate 80%
- 16. W H A T H A V E W E F O U N D S O F A R ?
- 17. 22 34 28 10 6 1 No Rarely Sometimes Rather often Often All the time Difficulties finding words 38 20 23 8 6 5 No Rarely Sometimes Rather often Often All the time Need for checklists 24 24 26 13 9 4 No Rarely Sometimes Rather often Often All the time Difficulties commencing tasks 47 24 13 10 6 No A bit Moderately A lot Very much Social isolation because of fatigue
- 18. 5 16 32 36 10 Very good Good Satisfying Bad Very bad General fitness 46 13 14 9 6 12 No Rarely Sometimes Rather often Often All the time Difficulties walking the stairs 52 17 15 8 6 4 No Rarely Sometimes Rather often Often All the time Pain prevents social activities 22 30 16 18 13 No A bit Moderately A lot Very much QoL pain
- 19. 63 13 13 4 4 3 Nej Enstaka gång Ibland Ganska ofta Ofta Hela tiden ”Emotionally incontinent” 75 8 8 4 3 2 No Rarely Sometimes Rather often Often All the time Difficulties having affectionate feelings 85 7 4 2 2 1 No Rarely Sometimes Rather often Often All the time Difficulties remembering feelings 23 33 23 8 9 4 No Rarely Sometimes Rather often Often All the time Feeling low
- 20. 83 8 3 3 2 No A bit Moderately A lot Very much Uncomfortable with hugs 5 19 30 16 30 Very good Good Satisfying Bad Very bad Sexual desire 4 14 18 23 41 Very good Good Satisfying Bad Very bad Sex life 74 10 4 5 7 No A bit Moderately A lot Very much Stigmatizing scars
- 21. 85 15 Yes No Lives in same place as pre-ICU 49 51 No Yes Moved because of new handicap 2 3 70 15 10 Much better A bit better Same A bit worse Much worse Household economy 43 23 20 Yes Not sure No Same profession in 2 years
- 22. W H A T W I L L W E D O N E X T ?
- 23. What is next? Study-specific questionnaire Item reduction ICU-specific questionnaire Translation Further validation
- 24. H O W C O U L D Y O U U S E T H I S ?
- 25. Important Areas of Use Long-term follow-up in post-ICU clinic New endpoints in research
- 26. W H A T S H O U L D Y O U R E M E M B E R ?
- 27. Keypoint We need to start measuring the things that matters for survivors
- 28. T H A N K Y O U ! j o h a n . m a l m g r e n @ g u . s e