Measuring health-related quality of life in sepsis survivors and caregivers: a mapping review and a preliminary conceptual framework

To identify and characterize instruments used to assess post-sepsis syndrome and health-related quality of life (HRQoL) in adult sepsis survivors and/or caregivers, and to map a conceptual HRQoL framework for post-sepsis recovery.

A mapping review was conducted. Eight electronic databases were searched from inception to 19 May 2025 to identify peer-reviewed studies using at least one instrument to assess HRQoL among adult sepsis survivors. Two reviewers independently screened titles, abstracts, and full texts for eligibility. Data were extracted and summarized using tabular and narrative forms. Visual mapping techniques were used to map domain coverage and identify gaps in sepsis-specific instrument validation.

Seventy-three studies were included, most originating from the United States (n = 20, 27.8%), Germany (n = 18, 24.7%), and Japan (n = 5, 6.9%). A total of 101 instruments were identified. The most frequently used measures were the 36-Item Short Form Survey (SF-36) (n = 17, 23.3%), WHO/Zubrod score (n = 8, 11.0%) and Posttraumatic Stress Scale (PTSS-10) (n = 8, 11.0%). Nearly all instruments (98.0%) were validated in non-sepsis populations; only the SF-36 and Reintegration to Normal Living Index (RNLI) had undergone validation in sepsis survivors. Cognitive and psychological domains were most commonly assessed, whereas pain, sleep, and fatigue were underrepresented.

Considerable variability exists in post-sepsis HRQoL measurement, with limited sepsis-specific validation. A preliminary framework, derived from this review, highlights the multidimensional nature of post-sepsis recovery and provides a hypothesis-generating foundation for the development of sepsis-relevant patient-reported outcome measures to support survivorship care.