What matters most to sepsis survivors: a qualitative analysis to identify specific health-related quality of life domains

Christian König, Bastian Matt, Andreas Kortgen, Alison E. Turnbull, Christiane S. Hartog

Research output: Contribution to journalReview articlepeer-review

Abstract

Purpose: It is unknown how sepsis survivors conceptualize health-related quality of life (HRQL). We aimed to identify important HRQL domains for this population. Methods: A literature search was performed to inform an interview guide. Open-ended interviews were held with 15 purposefully sampled sepsis survivors. Interview transcripts were analyzed by interpretative phenomenological analysis to allow themes to develop organically. Resulting codes were reviewed by an independent expert. The preliminary list of domains was rated in a two-round Delphi consensus procedure with therapists and survivors. Results: Eleven domains emerged as critically important: Psychological impairment, Fatigue, Physical impairment, Coping with daily life, Return to normal living, Ability to walk, Cognitive impairment, Self-perception, Control over one’s life, Family support, and Delivery of health care. Sepsis survivors want a “normal life,” to walk again, and to regain control without cognitive impairment. Family support is essential to overcome sepsis aftermaths. Conclusions: Survivors described many HRQL domains which are not captured by the QoL instruments that have traditionally been used to study ICU survivorship (i.e., SF-36 and EQ-5D). Future studies of QoL in ICU survivors should consider using both a traditional instrument so that results are comparable to previous research, as well as a more holistic QoL measurement instrument like the WHOQOL-BREF.

Original languageEnglish (US)
Pages (from-to)637-647
Number of pages11
JournalQuality of Life Research
Volume28
Issue number3
DOIs
StatePublished - Mar 15 2019

Keywords

  • Health-related quality of life domains
  • Patient-reported outcome
  • Qualitative research
  • Sepsis

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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