Is there a role for patients and their relatives in escalating clinical deterioration in hospital? A systematic review

Abstract Background Measures exist to improve early recognition of, and response to, deteriorating patients in hospital. However, deteriorating patients continue to go unrecognized. To address this, interventions have been developed that invite patients and relatives to escalate patient deterioration to a rapid response team (RRT). Objective To systematically review articles that describe these interventions and investigate their effectiveness at reducing preventable deterioration. Search strategy Following PRISMA guidelines, four electronic databases and two web search engines were searched to identify literature investigating patient and relative led escalation. Inclusion criteria Articles investigating the implementation or use of systems involving patients and relatives in the detection of clinical patient deterioration and escalation of patient care to address any clinical or non‐clinical outcomes were included. Articles’ eligibility was validated by a second reviewer (20%). Data extraction Data were extracted according to pre‐defined criteria. Data synthesis Narrative synthesis was applied to included studies. Main results Nine empirical studies and 36 grey literature articles were included in the review. Limited studies were conducted to establish the clinical effectiveness of patient and relative led escalation. Instead, studies investigated the impact of this intervention on health‐care staff and available resources. Although appropriate, this reflects the infancy of research in this area. Patients and relatives did not overwhelm resources by activating the RRT. However, they did activate it to address concerns unrelated to patient deterioration. Conclusions Activating a RRT may not be the most appropriate or cost‐effective method of resolving non‐life‐threatening concerns.


| BACKGROUND
Clinical deterioration is marked by a period of clinical instability 1 which can occur at any time during a patient's illness, but is more common following emergency admission to hospital, after surgery and during recovery from a critical illness. 2 In-hospital clinical deterioration that is not promptly responded to can lead to numerous severe consequences for the patient including increased length of hospital stay, cardiac arrest, admission to the intensive care unit (ICU) and increased morbidity and mortality. [3][4][5] Such serious adverse events may be prevented by recognizing and responding to early signs of clinical deterioration. 6,7 To aid the recognition of and response to clinical deterioration, early warning score (EWS) systems and rapid response teams (RRT) have been introduced in countries including the UK, USA and Australia. 8 EWS is based on routine physiological measurement of patients' vital signs from which a score is calculated and recorded.
When a patient's EWS is outside the normal range, this can be indicative of clinical deterioration and can prompt health-care staff to escalate patient care and trigger a RRT. A RRT typically consist of medical and nursing staff with critical care skills that provide timely treatment to support the deteriorating patient on the ward. 9 However, evidence for the efficacy of EWS and RRT systems at reducing in-hospital mortality is equivocal. [10][11][12] The management of critical illness remains a problem as some patients who are deteriorating continue to go unrecognized and appropriate, timely action is not always taken. 13 Increasingly, patients are empowered to be active partners in their health care, with treatment decisions ideally being made between health-care staff, patients and their relatives 14,15 and patient involvement is promoted as a means of improving patient safety. 14,16 Detecting clinical deterioration and escalating care is one such area where patients and their relatives could be involved. Nurses may identify patient deterioration using intuitive reasoning that develops with experience 17 and that is mediated by their knowledge of the patient. 8 It is intuitive to think that patients and their relatives have knowledge of the patient and their norms, and may sense whether the patient's clinical condition is deteriorating. This has been especially well documented in paediatric deterioration where relatives' recognize signs that the patient is deteriorating before health-care staff. 18 There is a growing acceptance of patient and relative led escalation in health-care services, and it has been implemented in a number of institutions. Indeed, a recent study that aimed to determine the prevalence and characteristics of RRTs in hospitals in the USA found that 69% of 103 institutions had introduced patient and relative led escalation. 19 Therefore, it is important to understand how patients and their relatives recognize and escalate deterioration using these systems, and whether these systems are effective at preventing deterioration, to indicate how patients and their relatives can contribute towards improving the management of clinical deterioration in hospital. This article aimed to systematically review citations that: (i) identify and describe systems involving patients and relatives in the process of escalating in-hospital clinical deterioration, (ii) describe how these systems have been implemented, and (iii) investigate the effectiveness of these systems at preventing in-hospital clinical deterioration. This topic will be summarized with regard to the available peer reviewed, academic literature and non-peer reviewed, grey literature. A decision was made to include grey literature to examine what is happening in practice, and also because practitioners may not have the same incentive as academics to publish in peer-reviewed journals. 20 The implications of engaging patients and relatives in the escalation of clinical deterioration will also be outlined.

| Search strategy
This systematic review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-analyses statement (see

| Eligibility criteria and study selection
Eligibility criteria applied to academic literature are defined in Table 1.
For grey literature, eligibility criteria used were the same as that applied to academic literature except it was not necessary for grey literature to use comparison groups or outcome measures. The titles and abstracts of identified citations were screened against the inclusion criteria, and the full texts of potentially relevant citations were obtained and reviewed for inclusion by one reviewer (AA). A random sample of 20% of the citation titles and abstracts was screened independently against inclusion criteria by three-second reviewers (RL, JOH, MC). To resolve any discrepancies in citation inclusion, a discussion was held between the reviewers to reach a consensus.
After discussion, the eligibility criteria for grey literature were altered.
When screening citations against the new grey literature eligibility criteria, 100% consensus was reached for citation inclusion.

| Assessment of study quality
Study quality was assessed using the Quality Assessment Tool for Studies with Diverse Designs (QATSDD). 23 The QATSDD is a validated quality assessment tool, comprising of 14 items on a four-point scale that can be applied to a methodologically diverse group of studies. The studies were scored to indicate the quality of the individual studies and the overall scope of research. One reviewer conducted quality assessments for all studies (AA), and then, three reviewers conducted a second quality assessment of all studies (RL, JOH, MC).
There was a strong, significant correlation between the first and second reviewers' quality assessments, r=.73, P=.039.

| Data extraction and synthesis
Data were extracted according to pre-defined criteria by a single reviewer (AA) for citations accepted after full text screening (see Supplementary material 3 for the data extraction form). The accuracy and completeness of data extraction was independently assessed by three-second reviewers (RL, JOH, MC). Owing to the heterogeneous designs of the included studies, narrative data synthesis was carried out on the academic and grey literature using guidance from Popay et al. 24 Narrative data synthesis is an approach in which the findings from multiple studies are summarized and synthesized principally using words 24 as opposed to numbers. Preliminary descriptions of the results of each of the citations were developed using textual descriptions, categories and tabulations, and then, an understanding of the relationship between individual study characteristics and their findings was explored. 24 The categories so derived are presented under subheadings in the results section.

| RESULTS
A total of 6188 potential citations were identified after de-duplication.
After title and abstract screening, 89 citations potentially fulfilled the eligibility criteria. The full texts of these citations were acquired and reviewed. Of these, nine academic articles from the academic litera-

| Role of patients and their relatives
The reviewed citations indicate that implemented systems centre on enabling patients and relatives to escalate care for suspected clinical deterioration, placing little focus on how patients and relatives might detect deterioration. While the aims of these systems are consistent, to summon health-care professionals to assess the patient's clinical condition and treatment needs in a timely manner, institutions appear to subscribe to different patient and relative led escalation protocols and invite different patient groups to engage in this service.

| Direct or indirect escalation of care
In five studies, the health-care organization implemented an indirect pathway of patient and relative led escalation, referred to as Condition Help. 14,25-28 Here, patients and relatives activated a Condition Help T A B L E 1 Eligibility criteria for the inclusion of academic articles in the review

Eligibility criteria
Population Adult and paediatric patients hospitalized in developed countries and their relatives or carers.
Intervention Implementation or use of systems involving patients and relatives in the detection of clinical patient deterioration and escalation of patient care.
Systems implemented alone or within a complex intervention.

Comparison
Detection and escalation by patients and relatives can be compared to detection and escalation by any other group.
Outcome Patient and relative detection and escalation could be used to address any clinical and non-clinical outcome.

Study design
Peer-reviewed reports of empirical, academic research were included. Non-peer-reviewed articles and grey literature were also included. Opinion pieces were excluded.

| Composition of the RRT
A further distinction identified between studies was the different types and numbers of health-care professionals used to comprise the Condition Help teams and RRT. This ranged from a nurse, nurse manager, respiratory therapist, resident physician and critical care fellow, 30 to a respiratory therapist and critical care nurse. 32 Although different patient and relative led escalation protocols were used, studies exploring patient and relative satisfaction found that they had favourable opinions towards the service. 14,29,32

| Escalation of paediatric or adult deterioration
The academic literature has focused more on investigating patient and relative led escalation for paediatric compared to adult deterioration. Early studies explored the development and implementation of patient and relative led escalation for paediatric deterioration, suggesting that this service was initially available to prevent clinical deterioration in hospitalized children. 26,31 In line with this, evidence indicates that children's clinical conditions can deteriorate at a faster rate than adults. 33 However, later studies did investigate patient and relative led escalation with adult patients.

| Use of small-scale pilot studies
Six of the studies reviewed made reference to the use of a smallscale pilot study where patient and relative led escalation was implemented on a small number of hospital wards for a short time period. During the pilot phase, health-care staff, patients and relatives provided feedback, including potential barriers to their engaging in the service. 31 Barriers identified for health-care staff included concerns that patients and families would summon the RRT for frivolous or non-emergent reasons. Barriers for patients and relatives were not explicitly stated. Parts of the service were revised prior to whole hospital implementation based on the feedback received. 32

| Clinical outcomes
The patient and relative led escalation protocols introduced across studies aimed to summon health-care professionals to assess the patient's clinical condition and treatment needs in a timely manner, treat patients accordingly and subsequently prevent clinical deterioration.
Gerdik et al. 32 reported a significant increase in transfers to higher level care and a non-significant decrease in the number of non-ICU AE when comparing the phase before RRT implementation and the phase after RRT and patient and relative led escalation implementation. Also, Ray et al. 31 reported an increase in the median number of days between cardiac arrests from 34 days to 104 days after imple-

| Quality assessment
The overall quality of the studies was fairly low. QATSDD scores ranged from 16% to 57%, with an average score of 31%. Few studies explicitly stated the study aims or objectives, and no studies justified their sample size or methods of data collection. Few studies provided descriptions of the analytic process or justification for the chosen analysis approach. One study made reference to the use of theory
when implementing patient and relative led escalation. Theory was not used in any study to underpin the design and content of patient and relative led escalation. Research settings, procedures for data collection and recruitment data were adequately described in most studies. Quality assessments are available from authors on request.

| DISCUSSION
The current systematic review explores how patients and their rela- Studies exploring patient and relative satisfaction found that they had favourable opinions towards the service. 14,29,32 Studies had a lack of theoretical underpinning making it difficult to gain insight into the active components of the interventions. 34 The low number of patient and relative activated RRTs reported in the academic and grey literature was interpreted as positive findings, showing that resources did not become overwhelmed. However, this may reflect an unwillingness by patients and relatives to participate in a behaviour that might be perceived as challenging health-care staff. 35 It will be important for future studies to explore possible mediating variables between the implementation of a patient and relative led es-

| Implications and recommendations
Patients and their relatives are likely to possess unique expertise on the patients' status. Intuitively, it makes sense for patients and relatives to contribute towards the management of the deteriorating patient. However, in a complex organization, it is difficult to engage patients and relatives in a way that is feasible and acceptable, to allow the expertise of both patient and provider to be utilized. Patient and relative led escalation has been implemented in a number of hospitals despite a lack of empirical evidence to suggest that it is the most effective means of engaging patients and relatives to reduce preventable deterioration.
The reviewed evidence did not investigate the extent to which patients and relatives can effectively detect patient deterioration. The available research on this topic points to a need to improve patients' and relatives' ability to detect changes in the patients' clinical condition indicative of deterioration. This warrants further investigation as it has important implications for the utility of patient and relative led escalation which rests on the assumption that patients and relatives can effectively detect clinical deterioration. Furthermore, patients and relatives often escalated patient care to resolve communication issues with health-care staff that were unrelated to suspected clinical deterioration. It is recommended that health-care organizations consider an alternative escalation route to allow patients and relatives to receive a timely response to concerns that are not life-threatening, but relate to communication issues with health-care staff.

| CONCLUSIONS
Health-care providers have leapt into involving patients and relatives in the management of patient deterioration. A more measured approach is now required to investigate the assumptions on which patient and relative led escalation is based. The reviewed evidence suggests that introducing patient and relative led escalation did not overwhelm staff and their available resources; however, it was difficult to establish the clinical effectiveness of the intervention. More high-quality research and reporting is required to explore how the expertise of patients and relatives may be most effectively used, in conjunction with health-care providers, to reduce preventable patient deterioration.