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

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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.

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Abbreviations

ARDS:

Acute respiratory distress syndrome

EQ-5D:

EuroQoL-5D

HRQL:

Health-related quality of life

ICU:

Intensive care unit

IPA:

Interpretative phenomenological analysis

PROM:

Patient-reported outcome measurement

RNL:

Return to normal living

SF-36:

Short Form 36 Health Survey

WHOQOL-BREF:

Short version of the World Health Organization Quality of Life assessment (WHOQOL-100)

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Acknowledgements

We thank all interview partners and experts who participated in the Delphi process. We thank the two student assistants.

Funding

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.

Author information

Authors and Affiliations

  1. Department of Anesthesiology and Intensive Care Medicine, Jena University Hospital, Am Klinikum 1, 07747, Jena, Germany

    Christian König, Bastian Matt, Andreas Kortgen & Christiane S. Hartog

  2. Integrated Research and Treatment Center for Sepsis Control and Care (CSCC), Jena University Hospital, Am Klinikum 1, 07747, Jena, Germany

    Christian König & Christiane S. Hartog

  3. Outcomes After Critical Illness and Surgery (OACIS) Group, Johns Hopkins University, Baltimore, MD, USA

    Alison E. Turnbull

  4. Division of Pulmonary and Critical Care Medicine, School of Medicine, Johns Hopkins University, Baltimore, MD, USA

    Alison E. Turnbull

  5. Department of Epidemiology, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, USA

    Alison E. Turnbull

Authors
  1. Christian König
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  2. Bastian Matt
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  3. Andreas Kortgen
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  4. Alison E. Turnbull
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  5. Christiane S. Hartog
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Contributions

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.

Corresponding author

Correspondence to Christiane S. Hartog.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

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

Informed consent was obtained from all individual participants included in the study.

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König, C., Matt, B., Kortgen, A. et al. What matters most to sepsis survivors: a qualitative analysis to identify specific health-related quality of life domains. Qual Life Res 28, 637–647 (2019). https://doi.org/10.1007/s11136-018-2028-8

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