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

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, 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.

The Physical and Mental Impact of Surviving Sepsis – A Qualitative Open Interview Study

“…The participants in this study experienced that they were left alone to cope with the consequences after returning home. Previous research has been focused on critically ill patients post ICU [39,35,30,[40][41][42], however all of the sepsis survivors in this study, post ICU or not, describe similar symptoms of sequelae. In light of the fact that much is unknown about PTSD in connection with the survival of critical illness, the dynamics of recovering physically and psychologically are important factors to consider when planning the care for the sepsis patients [43,44].…”

<p>SEPSIS. Educational and Best Practice Frontiers. Beyond the Boundaries of Fatality, Enhancing Clinical Skills and Precision Medicine</p>

“…the future achievements of bioinformatics or omics techniques, 21,22 as in cancer, 23,24 in liver and digestive disease 25 and in environmental and infection-related disease, 26 but also by point-of-care direct imaging and insight for the prevention of the possible emerging source of dissemination. 27 A realistic perception of disease is the basis for a strong agreement and alliance of doctors and patients against diseases that have many hidden effects. This is a key component for better coping with post-sepsis psychological and social consequences and for reducing the area of misunderstanding between health professionals and patients.…”

“…This is a key component for better coping with post-sepsis psychological and social consequences and for reducing the area of misunderstanding between health professionals and patients. 27 Support of patients with such severe diseases should not be only "consolatory", because such interventions may unmask the real needs and the quest for most appropriate potentially available expertise. 28 Standard sepsis education projects for clinical practitioners should be optimally established and well performed.…”

Focus on long-term cognitive, psychological and physical impairments after critical illness

“…There were no significant differences in the number of reported problems with mobility (sepsis 37.8% vs. non-sepsis 38.7%, p = 0.86), ability to perform self-care (24.7% vs. 26.0%, p = 0.44), pain/discomfort (42.4% vs. 41.6%, p = 0.54) or anxiety/depression (36.9% vs. 37.7%, p = 0.68) at 6 months. In a qualitative study of HRQL, the sepsis survivors reported difficulties with psychological disorders, fatigue, physical impairment, coping with daily life, ability to walk, return to normal living, cognitive impairments, self-perception, and control over life [8].…”