The problem: burden of injury and the quality of care
Globally, injuries affect 700 million people each year, including 30 million North Americans [1, 2]. Although healthcare systems provide patients with vital treatment for this major cause of morbidity and death, assessments of the quality of injury care demonstrate that care often fails to meet established standards . Studies show up to half of all critically injured patients do not receive recommended care , adverse events are common , and injury care may not meet the needs of certain patients. For example, patients with traumatic brain injuries, as well as their families, report deficits in information provided by health care professionals .
Measurement is necessary for improvement
In order to improve care, valid and reliable information on the quality of care is necessary. Healthcare professionals and organizations can use quality measurement tools to identify discrete problem areas, to aid in tailoring interventions to correct care issues, and to track subsequent improvements. Healthcare regulators may use quality information to develop quality-monitoring processes, to target inspections, and to document gaps in optimal care.
Measuring patient experiences: a key element to improving care
To date, quality measurement and improvement efforts in injury care have primarily focused on clinical processes and outcomes of care such as risk-adjusted mortality . However, ‘quality’ in healthcare is composed of more than clinical processes and outcomes. Quality of care has been defined by The Institute of Medicine (IOM) as “the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge” . The IOM emphasizes that ‘desired outcomes’ are a composite of patient and clinical goals such that care is patient-centered: respectful of and responsive to individual patient preferences, needs, and values. Therefore, measuring patient care experiences is a central element for assessing and improving the quality of injury care.
Capturing patient perspectives is often achieved with self-administered survey based measures. This approach allows patients to complete the measure when it is convenient for them to do so, and provides respondents time to think about the questions they are asked. Survey based measures are also relatively easy to administer; data can be obtained from large samples relatively quickly, and can be inexpensive.
Survey items measuring patient experiences or satisfaction with care usually consist of a patient-defined expectation or standard of care and an evaluation of the degree to which the expectation or standard was met in the patient’s experience . A key challenge to developing a valid instrument is to identify aspects of care that are relevant to patients’ perceptions of the quality of care. Quality is not composed of a single aspect of care. Valid measures contain multiple care domains that serve as constructs in the patients’ conception of quality. These components of care have been shown to vary across different patient populations .
A gap in trauma quality of care measurement and improvement
Patient-centered measures have been developed in select areas of healthcare. For example, the Consumer Assessment of Healthcare Providers and Systems (CAHPS) program (of the U.S. Agency for Healthcare Research and Quality) has developed valid and reliable measures of patient experiences with ambulatory (primary care, home care) and in-hospital medical-surgical (excluding trauma) care . These consumer-assessments of care measures have been used extensively in the United States and have been successfully used to identify deficits in care delivery and support quality improvement [12–15]. For example, a study of eight collaborative medical groups focused on patient-centered care in Minnesota successfully used a modified CAHPS survey measure to identify opportunities for care improvement, develop quality improvement interventions, and produce measurable improvements in patient experience .
Despite the central importance of patient perspectives of care and the demonstrable value of patient-centered measures, to date there has been limited progress in incorporating patient perspectives into quality measurement in injury care. Only a few instruments have been developed for assessing patients’ experiences or satisfaction with injury services. Many of the studies measuring patient perspectives of quality in injury care have used non-validated measures to assess patient perspectives of specific interventions or injury treatments [16–18]. A small number of reliable and valid measures exist, but were developed for specific patient populations (e.g. head injured patients) or specific injury care services (e.g. rehabilitation services) [17–19]. For example, surveys of traumatic brain injured patients and their families have highlighted deficits in care related to information and follow-up [6, 20]. While this is an important start to measuring patient experiences with injury care, assessments of the broader population of injured patients are needed. Currently, there are no published measures designed to capture the overall healthcare experiences of patients with major injuries and as a result, it is not possible to comprehensively evaluate the quality of care provided to injured patients they receive.
To address this gap in trauma quality improvement we developed the Quality of Trauma Adult Care Patient-Reported Experience Measure (QTAC-PREM) using a comprehensive literature review and focus groups with key trauma stakeholders . The measure is comprised of two components, one to evaluate acute care (hospital) and the other post-acute care (discharge, follow-up). The measure is designed to be completed by patients and evaluate their experiences with injury care. However, because some injured patients (e.g. severe traumatic brain injured patients) cannot complete a survey, we also developed a family member version to allow for proxy measurement of patient experience .
Pilot evaluation at a single trauma centre showed the measure to be feasible to implement (81% overall response rate) and provided preliminary evidence of content and construct validity. The pilot study highlighted several areas of care for potential improvement including: caregivers dealing with patient concerns, information about the effect of injuries on the patients’ lives, information about the recovery process, treatment of agitation and anxiety, consideration of personal hygiene and patients’ emotional needs, and inconsistency of information. Additional areas of post-hospital care highlighted for improvement were: information about discharge and home care, and family physicians not receiving hospital discharge information. For the most part, our findings were consistent with studies of patient and family experiences with general hospital care , intensive care unit services , and injury care [6, 25].
The next step in this research is to evaluate the psychometric properties of the measure in multiple trauma centres. External validation, through a multi-centre study, is needed to ensure the reliability, content validity and construct validity of the measure hold across different settings and different participants. This would increase the generalizability and comparability of the results and thereby increase the value of the measure as a quality improvement tool. A larger validation sample also provides the opportunity to create a short form version of the measure to decrease respondent burden and potentially increase response rates in the future.
The primary objectives of this study are:
Objective 1: To test the psychometric properties (test-retest reliability, construct validity, internal consistency, predictive criterion validity) and feasibility of the Quality of Trauma Adult Care Patient-Reported Experience Measure (QTAC-PREM) in multiple Canadian trauma centers.
Objective 2: To assess whether the construct validity of items varies by patient clinical or demographic characteristics.
Objective 3: To refine the measure based on results of the multi-center study to improve efficiency and usability.
The secondary objectives of this study are:
Objective 4: To assess the correlation between patient survey measure responses and patient family member’s survey measure responses.
Objective 5: To assess the convergent validity of the measure with the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey measure.
Objective 6: To assess the divergent validity of the measure with the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey measure.