Patient-reported outcome and experience measures in post-ECMO follow-up: a scoping review

OBJECTIVES: To map the use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in adult follow-up after extracorporeal membrane oxygenation (ECMO), and to identify measurement gaps relevant to critical care nursing practice. METHODS: This scoping review was conducted in accordance with the Joanna Briggs Institute methodology and reported in accordance with the PRISMA-ScR guideline. MEDLINE/PubMed, Web of Science and CINAHL Complete were searched, supplemented by reference-list screening. Eligible studies included adults treated with ECMO or extracorporeal life support and assessed after ICU or hospital discharge. Quantitative, qualitative, and mixed-methods studies published between 2016 and 2026 in English or Portuguese were included. Data were charted on study characteristics, instruments, domains, follow-up timing, and measurement gaps. Critical Appraisal Skills Programme-informed appraisal supported interpretive weighting. RESULTS: The MEDLINE/PubMed, Web of Science, and CINAHL Complete searches retrieved 2357 records. After removal of 86 duplicates, 2271 records were screened. The final review included 32 studies. PROM-focused evidence predominated: 25 studies assessed health-related quality of life, physical or functional recovery, mental health, respiratory burden, disability, cognition, return to work, or social participation. No formal PREM instrument was identified. Seven primary studies provided PREM-like evidence, mainly through qualitative or mixed-methods exploration of survivor and family experience, communication, support needs, decision-making, care transition, and follow-up experience. CONCLUSIONS: Post-ECMO follow-up literature measures patient-reported outcomes more consistently than patient-reported experiences. No formal PREM instrument was identified; however, qualitative and mixed-methods PREM-like evidence provides important insight into survivor and family experience. IMPLICATIONS FOR CLINICAL PRACTICE: Critical care follow-up after ECMO should integrate PROMs, PREMs, and family perspectives within structured person- and family-centred pathways.