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

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.

Relatives' perception of stressors and psychological outcomes - Results from a survey study.

PURPOSE: To identify relevant stressors or resources of relatives of critically ill patients and explore their relationship with psychological outcomes. MATERIALS AND METHODS: Prospective mixed-method study performed in 4 multidisciplinary ICUs of an urban academic hospital. Main relatives of consecutive patients with severe sepsis were questioned after 90days by structured interview. Quantitative data included demographic characteristics, ICU experience, Impact-of-Event Scale (posttraumatic stress) and Hospital Anxiety and Depression Scale (HADS); answers to open questions about stressors and resources were transcribed verbatim and analyzed by thematic analysis. RESULTS: 143/205 (70%) relatives participated. Satisfaction with communication and care was high. Experiencing a stressor predicted posttraumatic stress (p=0.014) and anxiety (p=0.019) after 90days. Most common stressors were feelings of helplessness and uncertainty. The perception of being overburdened in the ICU predicted posttraumatic stress, anxiety and depression (all p≤0.001); In addition, patient's death or survival with significant deterioration in quality of life compared to status before admission predicted depression (p=0.016). CONCLUSIONS: Our study confirmed a high prevalence of PICS-F among relatives of critically ill patients. Feeling overburdened and experiencing acute stressors may be related to negative psychological outcomes. In future, vulnerable relatives might be identified by a single-item screening tool on feeling overburdened.