Each year, injuries affect 700 million people worldwide [1, 2] with more than five million people dying from injuries annually . The human and societal burden of injuries is even greater with many survivors being permanently impaired and never returning to school, work or their “regular” lives [4, 5]. Evaluations of the quality of care in medicine have revealed that medical care often falls short of established standards, and this is also true of injury management. Half of all critically injured patients do not receive recommended care [6–10], medical errors are common in this population [11, 12] and preventable injury deaths in hospital are widely reported [13–17].
These studies were based on evaluation of guideline recommendations, but injury management is complex. Performance measures reflecting a range of decisions, processes and outcomes are needed to truly measure care delivery and its impact, and identify whether and how improvements are needed. To address the challenge of providing valid and reliable measurement of injury care quality, we implemented a research program to develop population-based and evidence-based quality indicators (QI) of injury care. A Research Synthesis of existing QIs of injury care in published and unpublished literature [18, 19] identified a large heterogeneous group of indicators (n = 1,572 QIs from 192 articles in three languages) supported by a limited evidence base [18–20]. Based on the results of the Synthesis, an International Audit of QI Practices was performed by conducting surveys and interviews of the leaders of 251 accredited North American and Australasian trauma centres. Ninety seven percent of participating centres employ QIs to measure the quality of injury care they deliver. However, this work identified an important gap in the science and practice of injury quality improvement, the absence of QIs that incorporate patient or family preferences, needs or values (n = 0/1,572 QIs identified in Research Synthesis and n = 19/11,460 QIs identified in International Audit of QI Practices).
The Institute of Medicine (IOM) defines quality as “the degree to which health care services for individuals and populations increase the likelihood of desired outcomes and are consistent with current professional knowledge.” Central to this definition is that desired outcomes be consistent with both clinical goals and the patients’ goals. In Crossing the Quality Chasm, the IOM emphasized the importance that care be patient-centred, “respectful of and responsive to individual patient preferences, needs, and values.” At present, patient preferences are best understood for primary care and chronic diseases . Conversely, relatively little is known about the priorities of critically injured patients who epitomize the challenges of providing patient-centred acute care. Surveys of traumatic brain injured patients and their family members have demonstrated that many perceive a significant information deficit from health professionals [24, 25]. Janssen et al.  demonstrated satisfaction with hospital care of patients with injuries is associated with perceptions of being involved in treatment decisions, being attended to by physicians and trusting physicians. While these are important initial learnings more information is needed.
As healthcare systems seek to provide patient-centred care, questions about how to measure this aspect of quality have become more important since previously developed QIs rarely incorporated patient perspectives [19, 27]. A qualitative study done in preparation for this research demonstrated patients of differing age, sex and health status have consistently indicated that patient participation is important so that quality improvement efforts can reflect patient preferences, something that cannot be determined by health providers [28, 29]. Patient-centred measures have been successfully developed in select domains of health care. For example, the Consumer Assessment of Health Providers and Systems Survey (CAHPS) has been used to evaluate patient experiences with primary care, and has identified shortfalls in care delivery and support quality improvement [30–32]. A hospital version of CAHPS (HCAHPS) has been developed to measure medical, surgical and obstetrical inpatient experiences with care, is publicly reported in the United States  and the results appear to correlate with processes of care for acute myocardial infarction, congestive heart failure, pneumonia and prevention of complications from surgery . No such patient-centred QIs currently exist to evaluate the quality of injury care.
The primary aim of this study is to develop and evaluate the first set of patient and family-centred quality indicators of injury care for critically injured patients. These indicators will be designed to reflect the emerging health needs of critically injured patients and to support health policy decision making to improve the quality of injury care . We define QIs as performance measures that compare actual care against ideal criteria [22, 36]. The QIs will be patient and family-centred, reflecting the preferences, needs and values of patients and their family members . We define critically injured patients as those with injuries from “the physical damage that results when a human body is suddenly subjected to energy in amounts that exceed the threshold of physiological tolerance”  resulting in admission to an intensive care unit, a step-down unit or a monitored, high acuity unit. The specific objectives of the proposed study are:
To determine the preferences, needs and values of recovering critically injured patients and family members from four trauma centres in Canada regarding quality injury care (Sub-Study A) including: the most important dimensions of quality of injury care; how quality of injury care should be measured; how quality should be reported; and how quality should be improved.
To develop patient and family-centred QIs in injury care using a multi-step development process (Sub-Study B).
To pilot test the patient and family-centred QIs for construct validity, intra-rater reliability, and clinical sensibility (Sub-Study C).