Background

There is now a rising commitment to acknowledge the role patients and families play in contributing to their safety. This review focuses on one type of involvement in safety ‐ patient and family involvement in escalation of care for serious life‐threatening conditions i.e. helping secure a step‐up to urgent or emergency care ‐ which has been receiving increasing policy and practice attention. This review was concerned with the negotiation work that patient and family members undertake across the emergency care escalation pathway, once contact has been made with healthcare staff. It includes interventions aiming to improve detection of symptoms, communication of concerns and staff response to these concerns.

Objectives

To assess the effects of interventions designed to increase patient and family involvement in escalation of care for acute life‐threatening illness on patient and family outcomes, treatment outcomes, clinical outcomes, patient and family experience and adverse events.

Search methods

We searched the Cochrane Central Register of Controlled Trials (CENTRAL, MEDLINE (OvidSP), Embase (OvidSP), PsycINFO (OvidSP) ClinicalTrials.gov and the World Health Organization (WHO) International Clinical Trials Registry Platform from 1 Jan 2000 to 24 August 2018. The search was updated on 21 October 2019.

Selection criteria

We included randomised controlled trials (RCTs) and cluster‐randomised controlled trials where the intervention focused on patients and families working with healthcare professionals to ensure care received for acute deterioration was timely and appropriate. A key criterion was to include an interactive element of rehearsal, role play, modelling, shared language, group work etc. to the intervention to help patients and families have agency in the process of escalation of care. The interventions included components such as enabling patients and families to detect changes in patients’ conditions and to speak up about these changes to staff. We also included studies where the intervention included a component targeted at enabling staff response.

Data collection and analysis

Seven of the eight authors were involved in screening; two review authors independently extracted data and assessed the risk of bias of included studies, with any disagreements resolved by discussion to reach consensus. Primary outcomes included patient and family outcomes, treatment outcomes, clinical outcomes, patient and family experience and adverse events. Our advisory group (four users and four providers) ensured that the review was of relevance and could inform policy and practice.

Main results

We included nine studies involving 436,684 patients and family members and one ongoing study. The published studies focused on patients with specific conditions such as coronary artery disease, ischaemic stroke, and asthma, as well as pregnant women, inpatients on medical surgical wards, older adults and high‐risk patients with a history of poor self‐management.

While all studies tested interventions versus usual care, for four studies the usual care group also received educational or information strategies. Seven of the interventions involved face‐to‐face, interactional education/coaching sessions aimed at patients/families while two provided multi‐component education programmes which included components targeted at staff as well as patients/families. All of the interventions included: (1) an educational component about the acute condition and preparedness for future events such as stroke or change in fetal movements: (2) an engagement element (self‐monitoring, action plans); while two additionally focused on shared language or communication skills.

We had concerns about risk of bias for all but one of the included studies in respect of one or more criteria, particularly regarding blinding of participants and personnel. Our confidence in results regarding the effectiveness of interventions was moderate to low.

Low‐certainty evidence suggests that there may be moderate improvement in patients’ knowledge of acute life‐threatening conditions, danger signs, appropriate care‐seeking responses, and preparedness capacity between interactional patient‐facing interventions and multi‐component programmes and usual care at 12 months (MD 4.20, 95% CI 2.44 to 5.97, 2 studies, 687 participants). Four studies in total assessed knowledge (3,086 participants) but we were unable to include two other studies in the pooled analysis due to differences in the way outcome measures were reported. One found no improvement in knowledge but higher symptom preparedness at 12 months. The other study found an improvement in patients’ knowledge about symptoms and appropriate care‐seeking responses in the intervention group at 18 months compared with usual care.

Low‐certainty evidence from two studies, each using a different measure, meant that we were unable to determine the effects of patient‐based interventions on self‐efficacy. Self‐efficacy was higher in the intervention group in one study but there was no difference in the other compared with usual care.

We are uncertain whether interactional patient‐facing and multi‐component programmes improve time from the start of patient symptoms to treatment due to low‐certainty evidence for this outcome. We were unable to combine the data due to differences in outcome measures. Three studies found that arrival times or prehospital delay time was no different between groups. One found that delay time was shorter in the intervention group.

Moderate‐certainty evidence suggests that multi‐component interventions probably have little or no impact on mortality rates. Only one study on a pregnant population was eligible for inclusion in the review, which found no difference between groups in rates of stillbirth. In terms of unintended events, we found that interactional patient‐facing interventions to increase patient and family involvement in escalation of care probably have few adverse effects on patient’s anxiety levels (moderate‐certainty evidence).

None of the studies measured or reported patient and family perceptions of involvement in escalation of care or patient and family experience of patient care. Reported outcomes related to healthcare professionals were also not reported in any studies.

Authors’ conclusions

Our review identified that interactional patient‐facing interventions and multi‐component programmes (including staff) to increase patient and family involvement in escalation of care for acute life‐threatening illness may improve patient and family knowledge about danger signs and care‐seeking responses, and probably have few adverse effects on patient’s anxiety levels when compared to usual care. Multi‐component interventions probably have little impact on mortality rates. Further high‐quality trials are required using multi‐component interventions and a focus on relational elements of care. Cognitive and behavioural outcomes should be included at patient and staff level.