What matters most to sepsis survivors: a qualitative analysis to identify specific health-related quality of life domains
It is unknown how sepsis survivors conceptualize health-related quality of life (HRQL). We aimed to identify important HRQL domains for this population.
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.
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.
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.
KeywordsSepsis Health-related quality of life domains Qualitative research Patient-reported outcome
Acute respiratory distress syndrome
Health-related quality of life
Intensive care unit
Interpretative phenomenological analysis
Patient-reported outcome measurement
Return to normal living
Short Form 36 Health Survey
Short version of the World Health Organization Quality of Life assessment (WHOQOL-100)
We thank all interview partners and experts who participated in the Delphi process. We thank the two student assistants.
CK and CSH planned the study and drafted the manuscript. CK conducted the study and gathered data. CK, BM, and CSH analyzed and interpreted the data. AET and AK revised the work for important intellectual content. All authors gave final approval of the version to be published.
Christian König and Bastian Matt received a scholarship from the Center of Sepsis Control & Care (CSCC). The CSCC is supported by the German Ministry of Education and Research (Grant No. 01 E0 1002). Christiane S. Hartog was partly funded by the Mid-German Sepsis Cohort which receives funding from the CSCC and the Rudolf Presl GmbH, Kreischa. The funding source had no influence on study design, collection, analysis, and interpretation of data.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
The study was approved by the ethics committee of Jena University Hospital (IRB No. 4392-04/15). All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
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