What measures have been used to explore the outcomes of family members of critically ill patients: a scoping review

Abstract

Background: Family members of critically ill patients are known to experience short and longer term challenges, including emotional and social problems. To undertake robust future interventional research to support this cohort, we undertook a comprehensive evaluation of the measures used in family outcome research to date. Design: Scoping review. We searched Medline, PsycINFO, Scopus, CINAHL, and Web of Science (core collection) for articles published between 2000 and 2024 which examined the outcomes of family members of critically ill patients. Data on outcome measures, study design, and population characteristics were extracted from eligible studies. Results: We reviewed 9873 abstracts and identified 388 eligible unique family member cohorts. Across these studies, there were 59 (15.2%) randomised control trials, 287 (74.0%) observational cohorts, 8 (2.1%) quality improvement programmes, and 34 (8.8%) non-randomised controlled interventional studies. Most research was undertaken in USA, Canada, and Europe (n = 264, 67.5%). A total of 218 different outcomes measures were used across the studies included. In this review, 345 (89%) studies measured emotional or psychological outcomes, 85 (22%) measured family experience outcomes, 65 (17%) measured general functional status, quality of life or well-being outcomes, 35 (9%) measured environmental or social outcomes, and 10 (3%) measured cognitive outcomes. Conclusions: We identified 388 studies which reported the outcomes of family members of critically ill patients. Over 200 different outcomes measures were utilised, exploring conceptual domains such as quality of life as well as psychological and social outcomes. The majority of studies were observational in nature with variable follow-up timelines. This review has highlighted that a core outcome measure set is essential to enable reliable, robust, and comparable interventional research in this area.