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Patient-Reported Outcome Measures and Patient Activation

What Are Their Roles in Orthopedic Trauma?

Grogan Moore, Meredith L. BS; Jayakumar, Prakash MBBS, DPhil; Laverty, David MD; Hill, Austin D. MD; Koenig, Karl M. MD, MS

doi: 10.1097/BOT.0000000000001612
Supplement Article
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Summary: The rise of patient-reported outcome (PRO) measurement across medicine has been swift and now extends to the world of orthopedic trauma. However, PRO measures (PROMs) applied to trauma patients pose special considerations; measuring “episodes of care” is less straightforward, injuries are heterogeneous in their severity, and the patient's initial visit is “postinjury.” Obtaining baseline scores and assessing the impact of a traumatic event on mental health are key considerations. Currently, few, if any, trauma registries include PROs; though general and condition-specific PROMs plus the patient empowerment measure of Patient Activation represent meaningful inputs for the clinical decision-making process. To be useful in trauma care, PROMs should be psychometrically sound and validated, be used for capturing function, screen for mental state and substance use, and give the clinician a sense of the patient's “activation” (engagement in their own health). Although the implementation of routine PRO collection can seem daunting, clinicians can use a multitude of electronic resources to access validated measures and simplify the implementation process. Computer-adaptive testing has evolved to help minimize patient burden, and PROM collection must maximize efficiency. Once established as part of your practice, PROs become an important tool to track recovery, identify mental health issues, engage in the prevention of future injury, and enable care of the whole patient.

Department of Surgery and Perioperative Care, Dell Medical School, University of Texas at Austin, Austin, TX.

Reprints: Karl M. Koenig, MD, MS, Department of Surgery and Perioperative Care, Dell Medical School, University of Texas at Austin, 1701 Trinity St, Austin, TX 78701 (e-mail: karl.koenig@austin.utexas.edu).

The authors report no conflict of interest.

Accepted August 08, 2019

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INTRODUCTION

In recent years, patient-reported outcome (PROs) have commanded the attention of clinicians and researchers across medicine, and for good reason. PRO measures (PROMs) quantify the patient's perspective and perceptions in a way sometimes missed during the typical quick—and often rushed—clinic visit. General advantages relate to their ability to quantify the patient perspective on their condition and treatments in a standardized manner. They also allow for symptom tracking over time while offering window of insight into the biopsychosocial impact of a medical condition.

A slow shift from physician-reported to PROs has been observed in medical literature, and trauma is not immune.1 Publications for the year 2015 concerning PROMs in the trauma population number 27.8 times those published in 1985, greatly outpacing other categories, even after controlling for change in publication volume over time.2 When AO Foundation trauma surgeons were recently polled, familiarity with PROMs was found to be region- and center-specific.3 More were familiar with disease-specific PROMs than those that are general (60% vs. 43%). Furthermore, although PROMs may be increasingly widespread in the trauma literature, just over 21% of AO trauma surgeons report current use of PROMs. Despite slower adoption in trauma, we argue here for their importance to our field and posit that physicians ought to consider less traditional extending to patient-centered concepts PROMs (eg, activation and engagement) key for a successful recovery after trauma. We present a guide broadly focused on both what to measure as organized by function, screening, and segmentation, and recommendations on how implement a PROM program.

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Considerations for the Implementation of a PROM Program in Trauma

Although the patient experience of trauma resulting in a significant injury may be universally jarring, injuries are heterogeneous in nature. Hence, although the application of PROMs to a more homogeneous condition such as osteoarthritis seems more straightforward, this precise framework may not be directly applicable to trauma patients. For example, establishing the patient's health utility or functional measurement before injury is not possible for obvious reasons. However, retrospective administration of measures is a validated technique to identify patient baseline function. Furthermore, a multi-faceted approach to gathering PROM data in trauma is important to guide systems management and strategic clinical decision-making at a population health level. Collecting health utility measures to better assess the total impact of the injury to the patient and the patient's perception of their role in managing their health, in addition to the limb or condition-specific PROM, is crucial. This allows for comparison across all trauma patients presenting with vastly different injuries and combined injuries and anticipation of a patient's recovery course.

There is an urgency to trauma care that cannot be ignored, and multiple treatments may be indicated at various time points given the priorities of preserving life, function, and form, in this order. That tiered mission takes precedence at the early steps of the treatment process. Fitting a patient survey into the polytrauma patient's care pathway may seem rather nonessential amid the hierarchy of patient needs. However, this mindset must evolve, as moving the needle of care for this population requires more robust outcome measurement. PROM collection at uniform time points can prove challenging, but can be overcome with technology and better coordination of follow-up. In addition, there is a highly variable duration of care between patients, and in the case of an incapacitated patient, how can PROM completion be achieved? A proxy (family member or close friend) may be necessary, which has been validated in the geriatric patient populations.

From the standpoint of functional measurement, a traumatic injury may afflict very different anatomic regions and multiple injuries can have a cumulative effect. There are 2 types of PROM: general (global) and injury-specific (condition-level). In this scenario, general PROs may be more practical; these are also quite useful as crosswalks between care for various conditions and by various specialties. However, global health questionnaires were not designed to encapsulate patient status after acute injury. For example, a global PROM may question the patient regarding their ability to do yard work, when at present this patient has not even considered routine tasks such as lawn mowing while in a postinjury state. The combination of general and disease-specific tools is really required to adequately assess the patient.

The psychological impact of trauma can be far more profound than in other musculoskeletal conditions, and this highlights the need for mental health screens and a sense of how mental state intersects with functional PROM scores. Furthermore, in the aftermath of injury, recovery is what stands between the patient and their return to a semblance of normal life. Patient factors such as resiliency, engagement, and willingness to play an active role in care (ie, activation) determine their aptitude for taking on this challenge and hence should be measured as part of forming the plan of care.

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Function

First and foremost, a successful PROM for a musculoskeletal condition should focus on function. Of course, this can be objectively measured (ie, range of motion of the knee joint), but function as perceived by the patient is most aligned with what affects them on a daily basis. PROMs may reveal ongoing functional limitations extending beyond those expected, demonstrating a sustained need for care. As an example, for polytrauma patients with unstable pelvic fractures treated operatively, Short Form-36 (SF-36) and EQ-5D-3L scores did not change from 2-years-out to 8-years-out.4

There are 3 key boxes, termed psychometric properties, which must be checked before a PROM constitutes a good measure: reliability, validity, and responsiveness. Reliability relates to how well a tool repeatedly assesses the same item, validity is about whether it measures the content it portends to measure, and responsiveness is sensitivity to change over time5,6 With regard to function, a PROM checking all these boxes should consistently estimate a patient's functional ability in light of limitations due to injury.

Condition-specific PROMs abound, so the most evidenced measure of high psychometric quality for the condition should be selected to maximize utility and comparative power. For example, a recent robust systematic review concludes that although 22 different PROs pertain to ankle pain and disability, the ankle-fracture outcome of rehabilitation measure (A-FORM) is the most appropriate choice.7 The more scales used, the less useful measurement becomes, because cross-comparison capability decreases; a recent scoping review on PROs in trauma literature uncovered over 100 distinct measurement tools. Systematic reviews on injuries of specific anatomic regions are useful for identifying most commonly used measures; Turner et al8 summarize existing systematic reviews by trauma category, isolating the 1–2 most commonly used measures for each.

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Screening

Mental health screens indicate whether a patient should be flagged for potential psychological comorbidities. Patients in negative affective states, namely depression (21%) and anxiety (35%), are prevalent in recovering orthopedic trauma patients.9 Physical function, often seen as a separate domain entirely, intersects with mental health: anxiety attenuates functional improvement9 and depression increases risk of postoperative pain.10 Patient-reported satisfaction and functional ability scores are also affected by mental health state11

Posttraumatic stress disorder screeners are especially germane to the trauma population. The posttraumatic stress disorder-5 is a quick, 5-item screen for emotional sequelae of traumatic events.12 Given that recovery relates to patient psychosocial state, mental health PROMs hold value in that they can identify patients in whom attention to psychosocial issues would optimize recovery. As Haider et al13 discovered through the FORTE multicenter cohort study that patient-level factors such as age, sex, and education associate with long-term outcomes, whereas traditional injury severity measures do not. Social support is also critical, and PROMs capturing a patient's level of social support, such as the Social Health and Social Relationships sub-domains of PROMIS,14 likewise expose opportunity for optimizing recovery. Social support systems enable the recovery process. Patients return to work sooner after traumatic injury when they have more social support (eg, stronger relationships and family ties).15

Screening for substance abuse deserves the attention of orthopedic traumatologists, given its disproportionately high prevalence in this population.16,17 Drugs and excessive alcohol represent important facilitators of blunt or penetrating traumatic injury.18 Preinjury drug and alcohol users face more treatment complications19 and 30-day readmissions.20 Only a fraction of patients are tested at presentation: less than half receive blood alcohol testing and about one-third undergo urine toxicology, as of the 2016 NTDB annual report.21 Furthermore, drug and alcohol testing is not equitably administered, with racial and ethnic minority trauma patients tested at higher rates controlling for confounders.22

Patient-directed substance use screens are an efficient way to alert the provider of use patterns that may contribute to future trauma. Screening paired with brief interventions to target alcohol-related trauma are paving the way for progress in this realm.23,24 Failure to recognize and treat substance abuse is associated with recidivism, because a significant contributor to the injury has not been addressed. Self-report of alcohol use may be accomplished through the Alcohol Use Disorders Identification Tests (AUDIT), which is both sensitive and specific for distinguishing alcoholics from nonalcoholics.25 An abbreviated 3-question AUDIT-C is an extremely quick way to screen for alcoholism, and is publicly available on the National Institute on Drug Abuse portal at https://cde.drugabuse.gov/instruments. For drug use, the longstanding Drug Abuse Screening Test-10 asks about both nonmedical and misused pharmaceutical drugs over the past year.26 Drug abuse screening test instruments of various lengths are also easily accessed online. Also, these substance abuse PROMs do not require expensive labs or the need to obtain a specimen, an advantage for the value-conscious clinician.

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Patient Activation

In an area of orthopedics where successful recovery from injury is the primary goal, activation stratifies patients into meaningful categories. The construct of patient activation relates to a patient's comprehension of their role in their own health including the knowledge, confidence, and proficiency for managing it.27 Patients with higher activation levels are less likely to have unmet medical needs, and more likely to seek out information from their health care provider.28,29 In relation to trauma, it follows that a more activated patient would weather the recovery process more easily than a less activated patient—with more adherence to treatment recommendations, self-monitoring, personal research, and devotion to therapy. Compliance to rehabilitation exercises may also be affected, both in attendance and engagement.30,31 Activation, which can be measured by the short Patient Activation Measure-13 (PAM-13) or 10-item PAM-10 questionnaire (Insignia Health, Minnetonka, MN) transcends the significance of other PROMs in that this metric may inform all others.

Patients, just as much as their surgeons, need to be fully invested in their own recovery. Trauma surgeons strive for precision at the most granular level in the operating room (ie, millimeters of articular reduction), but often recovery is treated like a “black box.” Instead, one should capitalize on this desire for precise measurement and anticipating consequences from the operating room to the clinic by also measuring and anticipating patient factors for success in recovering from a trauma. The PAM, and other measures of engagement come into play, because they allow trauma clinicians to anticipate a patient's level of investment according to their level of activation. If clinicians know who to target, they can meaningfully empower patients into taking a more active role in their return to health. Patients of low activation, as measured by the PAM, can be targeted for interventions aimed at increasing a patient's drive to participate in management of their health. Both short- and long-term interventions to increase activation have been successfully attempted across various patient populations,32–35 although not always with positive results.36,37 Trauma surgeons can sometimes be fatalistic about an individual patient's chance of success, but simple interventions may unlock a brighter future health story if we can successfully identify and target these folks.

Segmentation by patient activation could also serve as a meaningful risk-adjustment tool when looking at expected outcomes from treatment. More activated patients are more satisfied with their care,38 and more satisfied patients engender happier clinicians,39,40 so more activated patients may translate to less physician burnout. In an increasingly value-based health care climate, the finding of lower billed care costs for patients of higher activation41 is germane to more appropriate stewardship of resources.

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Implementation

Over a quarter of spine, trauma, and maxillofacial surgeon respondents indicated that PROMs are too costly to implement into their daily routine. Nearly half also responded that such tools take too much time to be implemented into their daily practice.3 However, even in resource-poor overseas settings, PROs have successfully been used to gauge posttraumatic disability.42 Many PROMs take just seconds to complete, and integration in clinical practice need not require expensive infrastructure. Clinician engagement and real-time viewing capabilities are the key to successful collection, in addition to ease of access for each measure and expediting completion.43 It must be efficient and useful to both patient and physician to be widely adopted.

With formal vendor partnership for setup of a custom-built PRO collection platform, there are substantial costs involved, to the tune of thousands per year.44 However, the return on investment is quite high; this has been demonstrated in other areas of orthopedics. These levers of return center on more engaged patients, enabled research capabilities, and outcome transparency.

Computer-adaptive testing, reliant on item-response theory, offers item reduction without sacrificing precision of results.45,46 In these tools, subsequent questions presented to the patient are selected algorithmically based on previous responses,47 ensuring that only questions necessary for further honing the patient's status are asked. Computer-adaptive testings greatly alleviate patient “burden,” a concept that simply refers to the time and energy required for a patient to fill out a PROM. For example, in one commonly used PROM for physical function, a comprehensive 124 question bank condenses to 6 patient-facing questions on average.48

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Population Health and Collection Planning

As individual practices become more comfortable with PROM platforms and collection methods, registries to aggregate these results and subsequently draw powerful conclusions will become increasingly relevant. The National Trauma Data Bank (NTDB), the largest aggregation of U.S. trauma data ever assembled,49 currently ignores patient-reported metrics. PROMs plus PREMs, patient-reported experience measures, should be a consideration in the design of any trauma registry, because much of the varied degrees of “success” after an unexpected injury relates to the patient's perception of their recovery progress. PROM registries can inform both surgeon and patient in setting realistic expectations about time and difficulty of recovery.

When initiating PROM collection, a plan for how to assess a baseline score should be set. In the trauma setting, this will take place during a clinical encounter that is actually postinjury. Although recall bias should be a concern for assessing baseline function, retrospective self-evaluation by the injured patient is a superior approach to applying population norms,50 and strong association of these reports and those collected contemporaneously has been demonstrated across clinical studies.51 Alternatively, a trauma provider may opt to measure PROs at 2 weeks postinjury and then build up a score repository for the patient at regular time intervals following this early baseline (eg, 6 weeks, 6 months, 1 year). Having some PRO milestones is certainly preferred to none, and the key is surmounting the initial inertia to get started with PROM collection.

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CONCLUSIONS

As the voice of the patient, PROs are increasingly reported in trauma literature and have wide use for treatment decisions and evaluation. Validated and psychometrically robust measures for assessing function, screening for substance use and mental health, and segmenting the population by level of patient activation are highly useful tools in the delivery of care for traumatic injuries. Implementation requires some advanced planning, but can be a very simple process with the help of publicly available measures using computer adaptive testing algorithms. A concise suite of measures can accurately depict a patient's perceptions, is easily translatable across relevant populations, and efficiently conveys information to the clinician. We encourage a broader adoption of these tools for patients with traumatic orthopedic injuries.

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Keywords:

patient-reported outcome collection; patient-reported outcome measurement; functional outcomes after trauma; mental health screening; patient activation; patient segmentation

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