Patient- and family-centered performance measures focused on actionable processes of care for persistent and chronic critical illness: protocol for a systematic review

Advances in technology, establishment of evidence for efficacy of interventions, and subsequent adoption into practice have improved intensive care unit (ICU) survival rates [1]. Notwithstanding these advancements, approximately 10% of critically ill patients transition from acute critical illness to a state of persistent and in some cases chronic critical illness [2]. Persistent critical illness is reflected by ongoing critical illness and some degree of instability that is no longer directly attributable to the original reason for ICU admission [3]. Patients with chronic critical illness, in contrast, usually experience relative clinical stability but continue to require prolonged ICU stays and, in most cases, a prolonged need for mechanical ventilation [4‐6]. Patients with persistent or chronic critical illness (P/CCI) experience a syndrome of ongoing organ dysfunction, profound weakness, extreme symptom burden, and ongoing physical and cognitive deficits resulting in a difficult and prolonged course of recovery [5, 7]. Family members also experience significant physical and psychological burden, including anxiety, depression, and post-traumatic stress disorder that arguably require an enhanced level of support [8].

A recent population-based study of over one million ICU patients in Australia and New Zealand identified 5% experienced persistent critical illness defined as a length of stay of ≥10 days, but accounted for 33% of ICU bed days and 15% of hospital bed days [9]. Similar numbers in terms of persistent or chronic critical illness have been reported in the UK [10], Canada [11], and the USA [2]. High healthcare utilization results in increased healthcare costs with one US study estimating the attributable costs as high as $35 billion or 1.4% of the US healthcare expenditure [12]. Therefore, these patients contribute small actual numbers but high cost and care delivery burden to the ICU, hospital, and healthcare system. Moreover, these patients experience worse clinical outcomes with hospital mortality (20 to 49% [13]) and 1-year mortality (32 to 55% [14]) substantially higher than patients that require a short ICU admission. Less than half of these patients that survive ICU admission will return home and therefore require post-acute hospitalization institutional care [9].

Patients with P/CCI have unique and complex needs that may be distinct from those of patients at the acute stage of ICU admission and medical stabilization. Therefore, these patients require a change in the clinical management plan and overall goals of care to a focus on rehabilitation, symptom relief, discharge planning, and in some cases, ventilation discontinuation or end-of-life care [15]. Despite increasing recognition of the burden of P/CCI for patients, families, and the healthcare system, and differences in their care needs [16], few studies have been conducted to inform development of ICU care quality measures focused on actionable processes of care specific to this patient population. Processes comprise things that we do, or fail to do for our patients, i.e., treatment and care [17]. Actionable processes of care are those that clinicians have direct control over [18], i.e., commencing the weaning process or discontinuing sedation. Our group has identified that processes of care such as weaning and mobilization protocols infrequently include guidance specific to patients with P/CCI [19]. Moreover, few ICUs incorporate into practice those assessments and interventions deemed pertinent including communication adjuncts, anxiety and dyspnea assessment, and access to psychiatric services during ICU admission [19]. Quality indicators are tools that indicate care quality and compare actual care against ideal criteria [20]. Performance measures are tools to measure care quality. Existing indicators of ICU care quality such as rates of central line infection, ventilator-associated pneumonia, and unplanned extubation [21], and tools such as checklists that measure implementation of best practice [22], may not be sufficiently inclusive in terms of actionable processes of care relevant to patients with P/CCI.

At present, it is unclear if the absence of performance measures for potentially actionable processes of care specifically designed for patients with P/CCI contribute to poor experience and adverse outcomes. Provision of optimal care for these patients has implications for health care spending on critical care services [10], health care quality outcomes, and timely integration of appropriate services including chronic illness management, rehabilitation, community services, and palliative care. Additionally, the number of patients experiencing P/CCI is predicted to grow exponentially over coming years due to population aging and increased morbidity and thus the need to optimize care for these patients is imperative [12]. Therefore, our objective is to identify the processes of care, performance measures, quality indicators, and outcomes including reports of patient/family experience described in the current evidence base that are relevant to P/CCI patients and their family members.