Abstract: A geographically dispersed network of hospitals began the journey to integrate patient-reported outcome (PRO) data in the form of quality-of-life measurement into daily operations beginning in 2012, moving from episodic to continuous measurement, and from a research-based focus to one promoting real-time clinical intervention. This approach includes the ability to quickly and easily review longitudinal data on symptoms within the medical record, electronically receive (ie, practitioners) notification of patients in need of intervention, and organizationally address programmatic design and redesign opportunities through algorithms and pathways. Illuminated within this case study are descriptions of each deliverable achieved throughout implementation and subsequent refinement as well as discussed benefits from the perspective of the patient and clinician. In addition, opportunities to use real-world PRO data are touched upon from an oncology disease-specific and patient-cohort viewpoint, suggesting ways in which PRO data may be taken to its next level in utilization.
Measuring outcomes in a timely manner is a top priority for health care systems aiming to deliver high-quality, value-based care. Until recently, most quality measures have focused on care processes, the absence or presence of adverse events, and mortality, with less emphasis placed on the quantitative measurements of functional outcomes, symptoms, and quality of life. A shift in efforts to approach quality from the lens of what a patient values has resulted in a growing interest in utilizing patient-reported outcome (PRO) tools as a means of collecting this data. PRO tools allow for a patient’s expression of his/her own concerns and needs within the context of one’s personal life experiences.1 In turn, data of this nature, if harvested in real time, can also result in timely and targeted care intervention along with data for programmatic quality improvement.
In oncology, PRO tools used to capture a patient’s self-assessment of his/her symptoms are not entirely foreign. These tools have been used in clinical research for some time; however, their application in real-time clinical intervention and performance measurement remains in its infancy. Of particular interest is a recent landmark study in which the act of PRO collection was linked, not only to improvements in symptom management and enhanced quality of life, but also to longer survival.2 In a single-site randomized trial in the United States, more than 700 patients who underwent chemotherapy were randomly assigned to complete weekly web-based symptom questionnaires vs usual care. Patients in the intervention group who systematically completed symptom questionnaires were more likely to be alive at one year, were able to continue with treatment longer, and had fewer emergency department visits.3
To be successful, PROs must fit into existing workflows, be actionable at the point of care, and have the support of clinicians.4 Implementation must include a multidisciplinary team focused on all aspects of care and project development for a PRO process to provide the best results.5 Additionally, PROs can enhance the relationship between patients and clinicians, and provide an avenue for conversations that may not have occurred otherwise.6 Further, emerging evidence shows that the collection of PRO data from patients and its review during routine visits can result in additional benefits such as earlier detection of problematic symptoms and an increase in overall satisfaction with care.7-11 It has been shown that patients are interested in and satisfied with the integration of PROs into their clinical care.12
In this article, we describe the use of a PRO tool in multiple oncology centers as use evolved from episodic to continuous measurement, and from a research-based focus to one promoting real-time clinical intervention. We discuss the benefits of this approach from the perspective of the patient and clinician along with a description of each deliverable achieved throughout implementation and subsequent refinement. Both leadership and clinicians recognized that inherent in any integrative approach to individually tailored treatment is a commitment to safe, effective, quality care in which the voice of the patient is valued. A focus upon PRO data allows that voice to be easily heard.
Pro Tool, Implementation, and Initial Assessment
In 2012, a national network of 5 oncology centers geographically dispersed across the United States began efforts to embed data derived from a PRO instrument within its routine assessment of patient well-being. The project was submitted to the network’s Institutional Review Board (IRB), who deemed the project to be a process improvement project intended to impact care delivery and not subject to IRB approval.
The tool we designed and implemented, referred to as the Symptom Inventory Tool (or SIT), is comprised of a total of 27 quantitative questions. Thirteen questions address core symptoms (adopted from the MD Anderson Symptom Inventory [MDASI], a validated and tested tool used by many US hospitals13), while 6 relate to everyday functioning. Eight questions were added that were considered by the network’s clinicians to be relevant and central to managing symptom burden resulting from either the cancer itself or treatment of the disease such as constipation, swelling, sexual interest, and family relationships, to name a few. The self-assessment uses a 0 to 10 numerical rating scale where 10 represents the worst severity for a symptom and 0 indicates a symptom not present at all. That is, 10 denotes a significant impact on ones’ ability to function, and 0 indicates no impact at all. At the end of the tool is a single open-ended question intended to solicit any additional insight the patient would like to offer regarding his/her quality-of-life-related concerns.
Patients are encouraged to self-report their symptom burden and interference with activities of daily living on a continuous basis throughout their course of treatment as opposed to a single point in time. Patients complete the SIT electronically using a tablet computer upon the start of care and not more frequently than every 21 days to align with their treatment cycle. Clinical team members utilize these results at the start of the corresponding patient visit. While no additional clinical resources were added to support the program, a PRO analyst was in place at each center devoting approximately 15 hours weekly to overseeing the administration of the SIT and its associated data reporting activities, splitting his/her time between it and patient satisfaction.
In the first 6 months of implementation, a work plan was developed to identify and describe the tasks and resources necessary. Each hospital in the network had the opportunity to customize elements of the process flow, with core components remaining intact including an expectation that patients completing the SIT as new and return patients do so in the reception areas outside of the exam rooms. Staff were scripted to provide patient guidance without the influence of clinical intervention to avoid introducing any bias to the response process, thus increasing the likelihood of patients’ responding candidly. With rare exception, patients are encouraged to complete the assessment on their own.
Two common barriers were experienced at the onset. The first was initial misinterpretation of the scoring scale and recall period for self-reporting symptoms by the patient. This was quickly overcome by adding clarifying language in both patient educational materials relevant to the tool and within the instructions contained at the start of the assessment. The second barrier pertained to awareness on the part of the clinician that the PRO data does not replace a face-to-face clinical assessment but rather complements it, demonstrating a need to address both perceived process overlaps and efficiencies in the use of the data. Clinician-directed education was developed and presented in various forms.