Conceptualisation of survival after critical illness using Institution-free days as a composite primary outcome by intensive care unit survivors and clinicians: A qualitative study using framework analysis

Background The binary measurement of intensive care unit (ICU) outcomes of mortality and survival are rapidly being replaced by composite patient-centred outcomes. Objective The aim of this study was to investigate the perspectives of ICU survivors and clinicians regarding institution-free days (IFD) as a composite primary outcome. Methods We used the qualitative design using Framework Analysis as the underpinning methodological orientation to investigate IFD as a composite outcome to report ICU survivorship. Purposive sampling was used to identify and recruit adult participants (aged ≥ 18 years) into ICU clinician and ICU survivor (comprises patients and carers) focus groups. The focus groups were conducted between February 2025 and June 2025 using a semistructured interview guide that explored IFD and survival after critical illness. Data were managed using NVivo 15; trustworthiness was reported using Lincoln and Guba's criteria. Main results Fifteen ICU survivors (Ten patients and five carers) and sixteen ICU clinicians (six medical staff members, five nurses, and five allied health professionals) were recruited for this study. Two in-person ICU survivor focus groups and three online ICU clinician focus groups with 31 interviews were conducted in total. The framework domains identified from the ICU survivor focus groups were as follows: (i) Multidimensionality of survival; (ii) Aftermath of survival and adaptations; (iii) Shared journey through ; and (iv) Measurement of full scope of survival. The framework domains developed from the ICU clinician group were (i) Benchmarking survivorship; (ii) Complexities of survival; (iii) Adaptive and innovative health care; and (iv) Caregiver hardships. Overall, the four overarching common domains that were generated from the data were (i) Multidimensional metric; (ii) Measurement scope (using IFD); (iii) Dynamic life adaptations; and (iv) Caregiver hardships. Conclusions The collective insights derived from the focus groups underscore the conceptualisation of ICU survivorship in contemporary practice. In this context, IFD can be developed, validated and operationalised as a pragmatic outcome to report ICU survivorship in future clinical trials.