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Patient-reported outcome (PRO) measurements are an essential component of comprehensive, patient-centered care, including for gynecological oncology patients.

Implementing PROs, however, can be challenging, including knowing how to select appropriate measures and effectively display and interpret the data. A recent article in the provided a "practical guide" to integrating PROs into cancer care.

"We highlight the importance of collecting PROs from the patient's perspective. We provide a step-by-step guide to identifying clinically relevant symptoms and side effects for PRO symptom monitoring, assessing the relevance of existing PRO measures [PROMs] to assess these issues, and creating customized item lists from item libraries to fill in the gaps," wrote Julia Lai-Kwon, MBBS, BMedSci, MPH, of Peter MacCallum Cancer Centre in Melbourne, Australia, and colleagues. "We highlight key pearls and pitfalls in the interpretation of PRO data, including how data display strategies can improve interpretation of PRO scores."

In the following interview, Lai-Kwon, a medical oncologist and health services researcher, highlights some of the pros and cons of implementing PROs.

What are the advantages of electronic patient-reported outcome symptom monitoring?

Lai-Kwon: Electronic patient-reported outcome (ePRO) symptom monitoring typically involves administering electronic surveys containing questions about symptoms, using a computer, smartphone app, or an automated telephone system. People are asked to report symptoms on a regular basis -- between and/or at clinic visits -- with reminders sent via e-mail, text, or automated telephone system. Alerts are sent to clinicians for severe or worsening symptoms.

Multiple studies have demonstrated that systematic monitoring of patients using PROs can improve symptom control, physical function, treatment adherence, patient satisfaction and self-efficacy, health-related quality of life, cost-effectiveness, and overall survival, and also reduce emergency department presentations and hospital admissions.

Although systems can be deployed in people with both early-stage and advanced disease, those with advanced disease may be more symptomatic from their cancer and its treatment, and may therefore benefit more from proactive symptom management.

The Patient-Reported Outcomes Measurement Information System (PROMIS®) Network has developed a comprehensive repository of ePROs of major symptom domains that have been validated in cancer patients. A study by Montefiore Medical Center researchers found that can identify severe cancer symptoms in gynecologic oncology. Patients find PROMIS ePROs easy to complete and helpful in addressing symptoms, and PROMIS identification of severe symptoms increased referral to supportive services.

with gynecologic cancer chemotherapy. A Japanese study demonstrated that physicians tend to underestimate most adverse events, and responses using ePROs revealed that peak symptom deterioration occurred outside of outpatient visits. This suggests that ePROs and actions taken in response can improve patients' quality of life.

What steps do you recommend for clinicians seeking to select PROs for symptom monitoring?

Lai-Kwon: A critical preliminary step in setting up ePRO symptom monitoring is deciding what symptoms and side effects to monitor for. This might include proximal effects, such as cancer symptoms, disease-specific symptoms, and/or treatment-specific side effects.

We have provided a step-by-step guide to identifying clinically relevant symptoms and side effects for ePRO symptom monitoring, assessing the relevance of existing PROMs to assess these issues, and creating customized item lists to fill the gaps:

• Engage key stakeholders, including patients; caregivers; healthcare professionals, such as oncologists, nurses, and pharmacists; information technology specialists; and administrators. A PRO methodologist can also help support the selection of appropriate PRO measurements and highlight existing resources to guide this process.

• Identify clinically relevant symptoms and side effects: International guidelines provide a useful framework for selecting appropriate symptoms and side effects for monitoring. This could include review of the literature, medical records, existing PROMs and core outcome sets for the relevant population and extraction of items from these measures/sets, and interviews with key stakeholders to elicit further issues.

• Refine the list of clinically relevant symptoms and side effects: This could be done via either a modified Delphi survey with key stakeholders to identify and prioritize the most clinically relevant symptoms and side effects to monitor, or convening a panel of experts (patients, caregivers, and healthcare professionals) to select the most clinically relevant symptoms and side effects to monitor.

• Assess the appropriateness of existing PRO measures for monitoring selected symptoms and side effects.

• Create customized lists from item libraries to cover any missing symptoms or side effects: This is particularly pertinent when assessing treatment-related side effects of novel therapies. Multiple item libraries are publicly available, including the PRO version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE), the European Organisation for Research and Treatment of Cancer (EORTC) Item Library, and the Functional Assessment of Chronic Illness Therapy (FACIT) Searchable Library. Each item library has guidelines for how to create customized item lists using their items.

What are the "key pearls" in interpreting PRO scores?

Lai-Kwon: Collecting PROs is feasible and helpful for improving patients' quality of life and the quality of care in clinical practice. Clinical interpretation of PRO scores, however, can be challenging. As with other laboratory tests that clinicians learn to use, interpretation requires familiarization and engagement in learning about PROs.

What are the pitfalls in PRO implementation?

Lai-Kwon: The selected PROM may be off the shelf and not fit for the purpose. A PROM that has been designed for all patients with cancer may not be as useful as one that has items specific to that patient population or treatment of interest. In addition:

• The selected PROM and its scores may not be understood by either the patient or the physician. Education, effective and consistent data display strategies, and providing clinical interpretations of scores can help.

• The scores may not be acknowledged in the eyes of the patient or their caregivers. Patients may lose interest if they perceive that their PROs are not reviewed by their clinical team. Referring to PRO results in the clinic will help reinforce patient understanding of the utility.

• Many clinicians initially see little value-add from a PRO system, particularly when the implementation process is flawed. Conversely, though, many clinicians do see the added value in making their PROs more streamlined and efficient.

• Clinical alerts of high scores are both potentially helpful and potentially problematic, particularly if alerts occur too often ("alert fatigue") or fail to notify clinicians about a concerning symptom. Stakeholder engagement and iterative adjustments can help find the balance between false-negative and false-positive alerts. Abnormal PRO scores should link with specific care pathways and treatment guidelines to ensure that the issues detected are addressed.

• The clinical care path relevant to a concerning PRO score may be unclear. Abnormal PRO scores should link with specific care pathways and treatment guidelines to ensure that the issues detected are addressed.

• The PRO scores may not be integrated with the clinical workflow. Integration of PRO scores in the electronic medical record are helpful in ensuring that data are readily available for clinicians to review.

What is your main message for practicing oncologists?

Lai-Kwon: Symptom monitoring using PROs in people with advanced cancer is highly desired and valued by patients. Despite the challenges, implementing PROs in routine care remains a worthwhile investment in optimal patient care.

Read the review article here.