Written by Eesha Balar, Designed by Caroline Paik

Patient Reported Outcomes:

The New Future of Diagnosis

By Eesha Balar Designed by Caroline Paik

In a world where we are constantly seeking to improve, how can we optimize the efficiency of our healthcare system and make sure patients receive the care they need? Surprisingly, the solution may stem from a concept as simple as the patient-provider relationship. Traditionally, within this relationship, voices are heard unequally, with the physician holding the upper hand and making decisions based on what he or she sees clinically, often without much input on how patients truly feel. With shifting times and increasing awareness of the patient’s role in making health-related decisions, enter the patient-reported outcome (PRO) measurement system—patients are starting to have their voice heard as well, allowing for better communication regarding their needs, and a more reciprocal, transparent relationship.

The idea behind recording patient-reported outcomes is relatively simple—physicians can use a system to send patients a comprehensive list of questions, ranging from quality of life to specific symptoms they feel in relation to their disease to adherence to their current treatment plan, and use their answers to gain a well-rounded depiction of the patient for a more targeted treatment plan. While thoroughly developed for clinical trials, this measurement is relatively new to the medical practice world. The questionnaires, typically around 9-12 questions, are formed using well-established professional “rubrics,” such as the Common Terminology Criteria for Adverse Events (CTCAE), and are conducted electronically through email, telephone systems, or in-clinic kiosks. Depending on the practice, patients are sent reminders through their system of choice to complete the survey before, during, and/or after the visit. The systems used to measure these PROs vary in their features; for example, the eRAPID, or the Electronic patient self-Reporting of Adverse events: Patient Information and aDvice, system used commonly in oncology requires patients to report their symptoms from home, and the resulting data is transferred directly to the patient’s electronic health record in advance of the consultation. Another system used at Memorial Sloan Kettering Cancer Center sent automatic alerts to clinicians if a patient reported an answer indicating a serious symptom, or severely worsening conditions compared to the last time the survey was completed.1

The benefits to PROs are believed to outweigh its harms, for both the patient and physician. Generally, PROs can be taken across different disciplines, including oncology, primary care, surgical procedures, and beyond. Another important aspect is the system’s facilitation of critical care, as immediate action can be taken in response to completing a survey on PROs to prevent the patient’s health from deteriorating. Ad-

How are patient-reported outcome measurement systems formatted and integrated in routine practice?

What are the benefits and downfalls in utilizing PRO measurements?

ditionally, for the information that it provides to the physician, minimal time is needed for patients to complete their part. On the other hand, the data provided by patients will prevent any asymmetrical information exchange and cover any gaps in the physician’s “outsider” assessment—only the patient knows how they are truly feeling. On the scientific end, PROs will contribute toward a better understanding of the effects of the disease, assisting with future cases. More personally, in developing a specific course of treatment, the physician can be made more aware of the patient’s preferences. At the same time, there are many limitations when it comes to PROs. For example, the questionnaires are not always written perfectly and they do not include question or answer choices that are relevant to the patients’ condition. In a study on Parkinson’s patients at a Swedish university hospital, many patients felt that important areas regarding their health state were missing, or that questions did not provide any accurate options of how they were feeling. Additionally, the way the questionnaire was used in the study was inadvertently less relevant for certain populations, such as the elderly and those with worse health.2 In thinking about disparities, many PRO surveys are implemented on technology that not everyone may have access to. There are even deeper disparities of race, ethnicity, and education level— an investigation on backgrounds of patients who are willing to provide PROs displayed a significant difference between white and nonwhite groups, the youth and elderly, and those at higher education levels versus less-educated people, with the latter of each comparison not being fully represented by patient data.3 Another such barrier of usage pertains to errors that have not yet been addressed with wording, as PROs have only recently been introduced into the hospital setting. For example, patients may misinterpret an ambiguous question and select the incorrect choice. Additionally, questionnaires with only multiple choice-style formats and numerical scale answers, rather than open-ended style prompts, may not reflect accurately how patients really feel. In a mere 9 questions, how well can patients’ symptoms truly be assessed? There is still more research to be conducted on the reliability of PRO systems in displaying and therefore improving patients’ well-being, but the benefits seen thus far are promising. What does the future look like for PROs? PROs are increasingly being integrated with more advanced technology, especially applications on mobile devices. For instance, one recent app from Minnesota, called the PROMIS Reporting Insight System from Minnesota, is designed to be user-friendly and utilized in a variety of ambulatory settings in addition to for research. It addresses the issue of PRO data being transferred to health information technology systems, which makes it difficult for medical personnel to use and share information for research, by rendering it directly accessible for clinicians during a visit. The app is also unique in how it utilizes an algorithm to generate recommendations for the patient based on answers given and provides a live comparison to others with similar ailments, adding to physicians’ knowledge of symptom trends and providing patients with an idea of how others may be treated.4 In the future, such apps will therefore be useful in

“There are even improving reliability in data and patients represented. Arguably, the most impactful application of patient data from PRO-measuring techdeeper disparities of race, ethnicity, and nology like PRISM is towards policy. A retrospective study education level” discusses how data could be used in guiding pharmaceutical labelling of side effects, setting health policies on improving quality of life, and creating more effective clinical guidelines for professionals to refer to.5 With increasing usage of PRO-based tools, we may see many actions within our healthcare system not only shaped by administration, but also by the very agents the institution was set up to aid: patients. Overall, the PRO measurement system shows promise in providing patients a better ability to communicate with their physician. However, implementing this in all hospital systems and medical practices will require us to take a deeper look into possible barriers on both the patient and physician end. With current trends and new methods of implementing PROs, we can only hope that it will contribute towards greater transparency between patients and providers, and improve clinical decision-making within the wider healthcare community.

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