Study author and year | Country | Clinical context | Study design | Study aims | Scenario: real or hypothetical | Participant characteristics | Quality appraisal |
---|---|---|---|---|---|---|---|
Armstrong, S. et al. (2019) [24] | UK | Ambulance trials | Qualitative study | Understand the views of and experiences of expert informants | Real experiences and views of researchers regarding pre-hospital ambulance research | Academic researchers: n = 11 Clinical researchers: n = 3 | High |
Beshansky, J. R. et al. (2014) [25] | USA | Acute myocardial infarction | Quantitative descriptive study | Evaluate the utility of telephone survey data done as part of the EFIC process | As part of the IMMEDIATE trial investigating pharmacological myocardial metabolic support for acute myocardial infarction | Community members surveyed: n = 2079 Patients eligible for the study: n = 828 | High |
Booth, M. G. et al. (2005) [26] | UK | Cardiac arrest and severe trauma | Quantitative descriptive study | Assess public perception and attitudes | Two hypothetical scenarios of ICU research | Patients: n = 361 | Low |
Brown, P. et al. (2020) [27] | UK | Emergency department research | Qualitative descriptive study | Explore the experience of research nurses | Real experiences of healthcare professionals in ICU and emergency unit research | Research nurses: n = 10 | High |
Buckley, J. M. et al. (2016) [28] | UK | Emergency department research | Qualitative study | Investigate patients’ feelings | Hypothetical scenario of emergency research | Inpatients: n = 17 | High |
Burns, K. E. A. et al. (2011) [29] | Canada | Emergency department research | Quantitative descriptive study | Assess the general public’s attitudes | Three hypothetical scenarios of emergency research | Members of the public: n = 221 | Low |
Campwala, I. et al. (2020) [30] | USA | Haemorrhagic shock | Quantitative descriptive study | Learn about the experience of patients and surrogates and their general opinions | As part of the PAMPer study investigating pre-hospital plasma for haemorrhagic shock | Respondents in total: n = 93 | Moderate |
Cook, D. J. et al. (2008) [31] | Canada Australia NZ | Emergency department research | Quantitative descriptive study | Understand the experiences, beliefs, and practices of professionals involved in critical care research | Experiences of healthcare professionals and researchers in ICU and emergency unit research | Respondents (physicians, research coordinators, or others): n = 284 | High |
de Tonnerre, E. J. et al. (2020) [32] | Australia | Emergency department research | Quantitative descriptive study | Determine patients' perceptions | Real experiences and views of patients in emergency research | Suitable patients participated: n = 315/360 | Moderate |
Dickert, N. W. et al. (2017) [33] | USA | Acute myocardial infarction | Quantitative descriptive study | Explore views of patients | Hypothetical acute myocardial infarction study types | Patients with AMI: n = 30 | Moderate |
Dickert, N. W. et al. (2019) [34] | USA | Acute myocardial infarction and stroke | Quantitative descriptive study | Study experiences of patients | Real experiences of ICU patients in previous acute myocardial infarction/stroke research | Respondents by referred patients: n = 176/540 Patients: n = 107 Patient surrogates: n = 69 | Moderate |
Do Amaral Pfeilsticker, F. J. et al. (2020) [35] | Brazil | ICU research | Quantitative descriptive study | Address the willingness of patients to be enrolled in a scientific study as volunteers | Hypothetical ICU study | Pairs of ICU patients and their respective legal representatives: n = 208 | Low |
Furyk, J. et al. (2018) [21] | Australia | Emergency department research | Quantitative descriptive study | Give voice to the general public’s views of prospective and retrospective (deferred) consent | Hypothetical emergency research | Public responses: n = 1217 | Moderate |
Gigon, F. et al. (2013) [36] | Switzerland | ICU research | Quantitative descriptive study | Investigate the preferences of both patients and relatives | Two hypothetical ICU studies | Eligible patient responses: n = 185/472 Patient accompanied with relative: n = 125 Patient unaccompanied: n = 60 | Moderate |
Gobat, N. et al. (2019) [37] | Belgium, Spain, Poland, Ireland, the UK, Canada, Australia, New Zealand | Emergency department research | Quantitative descriptive study | Understand public views | Hypothetical scenarios of emergency research during an influenza pandemic | Members of the public: n = 6804 | Moderate |
Honarmand et al. (2018) [38] | Canada | ICU research | Prospective observational study | Describe the feasibility of the deferred consent model in a low-risk study | As part of the PRO-TROPICS trials | Critically ill patients in the ICU: n = 266/280 | High |
Houghton, G. et al. (2018) [39] | UK | Post-partum haemorrhage | Qualitative study | Investigate participants’ views | Clinical trial investigating the effect of tranexamic acid versus placebo for post-partum haemorrhage | Participants: n = 15 Consented while PPH was ongoing: n = 8 Consent was waived: n = 7 | High |
Kamarainen, A. et al. (2012) [40] | Finland | Cardiac arrest | Quantitative descriptive study | Survey the attitudes and experiences of surviving cardiac arrest victims, legal representatives, consent providers, and emergency physicians | As part of the pre-hospital index study investigating therapeutic hypothermia after cardiac arrest | Patients: n = 11/12 Consent providers: n = 17/25 Physicians: n = 13/13 | High |
Kleindorfer, D. et al. (2011) [41] | USA | Stroke | Quantitative descriptive study | Explore stroke survivors’ opinions | Hypothetical scenarios of stroke research | Ischaemic stroke patients (or proxies): n = 194/329 | Moderate |
Manda-Taylor, L. et al. (2019) [42] | Malawi | Emergency department research | Qualitative study | Examine the acceptability of deferred consent for research studies | Real experiences and views towards emergency department research | REC (research ethics committee) members: n = 5 Health care providers: n = 6 Local community members (one focus group): n = 12 | High |
Perner, A. et al. (2010) [43] | Denmark | ICU | Quantitative descriptive study | Survey attitudes amongst relatives of unconscious adult patients | Hypothetical ICU drug trial | Relatives of unconscious ICU patients: n = 42 | High |
Potter, J. E. et al. (2013) [44] | Australia | ICU | Quantitative descriptive study | Determine the opinion of participants | As part of the NICE-SUGAR study comparing blood glucose targets in ICU patients | Participants of the NICE-SUGAR study: n = 210 | High |
Scales, D. C. et al. (2009) [45] | Canada | ICU | Quantitative descriptive study | Determine patients’ preferences for different consent frameworks | Hypothetical study—randomised placebo-controlled trial of low-risk | Capable and consenting survivors of critical illness: n = 240 | Moderate |
Scicluna, V. M. et al. (2019) [46] | USA | AMI and stroke | Qualitative study | Explore the experiences of participants | Real experiences and attitudes of ICU patients towards their involvement in trials | Interviews: n = 27 Acute MI patients: n = 12 Stroke patients: n = 2 Surrogates for stroke patients: n = 13 | High |
Scicluna, V. M. et al. (2020) [47] | USA | Emergency department research | Quantitative descriptive study | Explore attitudes in patients | As part of the ESETT trial—comparing anticonvulsant therapies in status epilepticus | Participants: n = 317 Adult patients: n = 48 Surrogates for paediatric patients: n = 151 Surrogates for adult patients: n = 118 | Moderate |
Shamy, M. C. F. et al. (2019) [48] | Canada and Europe | ICU | Quantitative descriptive study | Investigate the knowledge and opinions of patients | As part of the ESCAPE trial—evaluating standard care plus thrombectomy in acute ischaemic stroke | Patients/authorised third parties who completed baseline survey: n = 33/56 Patients/authorised third parties who completed the 90-day follow-up survey: n = 27/56 | Moderate |
Terry, M. A. et al. (2017) [49] | USA | ICU | Prospective cohort study | Determine the extent to which ICU patients or surrogates support a deferred consent process for a minimal-risk study | As part of the microbiome study with added hypothetical scenarios | ICU patients: n = 135/157 | Moderate |