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

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.

Contributors

Claire Brown, Peter Hartley, Faye Forsyth, Leanne M. Boehm, Graham Martin, Isla Kuhn, Natalie Pattison, Bronwen Connolly, Nazir Lone, Valerie Danesh & Joanne McPeake

Publication

Journal: Intensive Care Medicine
Volume: 51
Issue:
Pages: -
Year: 2025
DOI: 10.1007/s00134-025-08072-z

Further Study Information

Current Stage: Completed
Date:
Funding source(s): This review was funded by an award from the National Institute of Health and Social Care Research (NIHR) Cambridge Biomedical Research Centre (NIHR203312). Peter Hartley is supported by Homerton College and the Health Foundation’s grant to the University of Cambridge for The Healthcare Improvement Studies Institute (THIS Institute). THIS Institute is supported by the Health Foundation, an independent charity committed to bringing about better health and health care for people in the UK.


Health Area

Disease Category: Other

Disease Name: Critical illness

Target Population

Age Range: 18 - 120

Sex: Either

Nature of Intervention: Intensive care

Stakeholders Involved

Study Type

- Systematic review of qualitative research

Method(s)

- Systematic review

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.

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