Study Examines Patient Preference in Patient-Reported Outcome Tracking

Patient-reported outcomes, or PROs, include important measures for patients with cancer. However, with multiple validated tools to track them, clinicians may find themselves debating on which one to use.

Recent research analyzed survivor preferences in patient-reported outcome tracking, and in doing so, discovered important aspects of the cancer experience that they wanted to be communicated with their care team. In a recent interview with Oncology Nursing News, study author Meagan Whisenant, PhD, assistant professor or research at the Cizik School of Nursing at UTHealth discussed the study – and the importance of patient-reported outcomes.

Oncology Nursing News: Can you explain your study and why it was important to conduct?

Whisenant: Recent evidence suggests that routinely and systematically monitoring cancer patient symptoms during treatment improves outcomes, including quality of life, functioning, ability to maintain therapy and even overall survival. However, there are a number of different validated questionnaires for asking patients about their symptoms and quality of life (QOL) and we are not sure whether patients have preferences about the types of questions they want to be asked and how they would like for their symptoms to be monitored. There are no existing best practices for routinely monitoring and managing symptoms in cancer outpatient care.

We asked 15 patients who were receiving treatment for cancer to complete 3 questionnaires that are frequently used in clinical care and research: the MD Anderson Symptom Inventory (MDASI), the Functional Assessment of Cancer Therapy-General (FACT-G), and the European Organization for the Research and Treatment of Cancer QOL Questionnaire-Core 30 (EORTC QLQ-C30)) and then conducted qualitative interviews to learn about their preferences for questionnaires.

What are the benefits in using patient-reported outcomes for patients with cancer?

Using validated patient-reported outcomes measures in cancer care provide the care team with reliable and valid information about how the patient is doing in terms of quality of life, symptoms, and functioning. This is especially important in outpatient care, when symptoms vary and change rapidly in the home setting. Unless the patient reaches out, the care team is often unaware of the status of the patient in between scheduled visits. Patients are often hesitant to reach out – in fact, in our work, we have seen that patients reach out to their care about 5% of the time when they are experiencing a moderate to severe symptom at home. Systematically monitoring symptoms facilitates communication between patients and providers in between visits and shifts the responsibility to initiate communication about symptoms away from the patient.

Using PRO measures routinely in cancer care has resulted in improved symptom-related communication, quality of life, symptoms, functioning, ability to tolerate and/or stay on prescribed treatment, reduced hospitalization and emergency room visits, and improved overall survival in research studies.

What were the findings of your study?

Participants described the importance of communicating various aspects of the disease and treatment experience to their care team, including their physical and emotional experience. They felt that validated questionnaires would help them communicate, especially if administered systematically. Participants felt that some of the questions on these PRO questionnaires were similar to the questions they were asked at clinic visits, especially the questions that ask about symptoms. Participants preferred shorter measures and preferred to have numbers and descriptors include in the response options. Importantly, participants were willing to complete PRO measures prior to every visit and the symptom burden measure (MDASI) specifically on a weekly basis in between visits.

What role do oncology nurses play in patient-reported outcomes?

Oncology nurses can recognize the importance of communicating with their patients about symptoms and QOL and facilitate systematic assessments using patient-reported outcomes measures. Because nurses are often the member of the interprofessional team that leads symptom management, they are key advocates in facilitating systematic symptom monitoring and management. Nurses can also be mindful of the need for brevity of questionnaires to reduce patient burden and select measures that are appropriate to the construct they wish to measure and the patient population in which the measure is being used.

What unanswered questions remain/what are next steps in this research?

We are currently conducting studies to better understand patient preferences for method of questionnaire administration (electronic versus paper and pencil; in the home versus in the clinic), preferred clinician response to various patient-provided symptom information (phone call, email, no response), and preferences for measure frequency and measure length in various cancer patient populations, from those in active treatment to those in survivorship. Additional next steps include conducting similar interviews with providers to better understand their preferences for facilitating systematic symptom monitoring and management, including their needs for resources such as decision support to assist in responding to PRO data.