Call to Action for Patient-Reported Outcome Measurements in Clinical Practice for NETs Patients


In a call to action to the neuroendocrine tumor clinical community during the 10th Annual NANETS Symposium, presenter Lesley Moody, MBA, addressed the importance of patient-reported outcomes and patient-reported outcome measurements in the everyday care of patients with NETs, beyond clinical trials.

In a call to action to the neuroendocrine tumor (NET) clinical community during the 10th Annual NANETS Symposium, presenter Lesley Moody, MBA, addressed the importance of patient-reported outcomes (PROs) and patient-reported outcome measurements (PROMs) in the everyday care of patients with NETs, beyond clinical trials.

“Patient-reported outcomes represent a paradigm shift in the way we can facilitate person-centered care and improve overall outcomes and quality of life for our patients if we’re asking them the questions. To do this we have to shift our thinking from doing this from trial and treatment perspective to using this in routine care,” said Moody, of the University of Toronto and Cancer Care Ontario.

PROs are most frequently collected during clinical trials, and that includes for patients with NETs. “The current patient-report outcome landscape in NETs is a bit varied,” she said. “I’d say the vast majority of the research that is published to date is in terms of [during a] trial or as trial posthoc analysis, but there are some small individual practices that are collecting patient-reported outcomes.”

Within Canada and portions of the United States, these data are also used at the administrative levels and to set policy and legislation. Moody did urge, though, a need for the use of PROs to be increasingly incorporated into clinical practice to provide better care for patients with NETs who experience symptoms as a result of treatment.

Additionally, Moody commented that of the small practices already collecting PROs, most do not typically have systematic collection of the outcomes and, often, generic quality-of-life measurements are used and criticized “that they’re less sensitive to change and may fail to capture important symptom or quality-of-life profiles that are important to the patient.”

Generic measurements, however, do allow for comparisons with patient populations with different conditions and with normative data. Condition-specific measurements, on the other hand—such as EPIC, the Expanded Prostate Cancer Index Composite, that is used by Cancer Care Ontario to focus on symptoms like bladder incontinence that are pertinent to patients with prostate cancer—have a greater sensitivity to changes because they focus on concerns that are relevant to one specific condition. Still, these measurements make it more difficult to compare symptoms across patient populations with different conditions.

Interest in PROs for clinical practice is on the rise, according to Moody, who demonstrated that the number of PubMed articles using PROs terminology has increased exponentially between 2003 and 2013, and she expects it to increase even more going forward.

In addition, the body of evidence for the benefit of using PROs in clinical practice is also growing. For example, a systematic review in 2013 of the impact of routine collection of PROMs in an oncology setting found strong evidence regarding the benefit in terms of patient-physician communication.1“We know that that’s actually a pillar of person-centered care and so it’s very important that we found that, but there was mixed evidence in terms of the improved health outcomes,” said Moody.

Intervention according to the symptoms registered in PROs improved patient outcomes, according to the results of a randomized, controlled trial. Among cancer patients who provided PROs in the interventional group where nurses were alerted immediately of worsening symptoms and physicians received an update of symptoms before each visit, health-related quality of life improved in these patients by 34%.2Health-related quality of life improved by 18% among patients who received standard care.

Further, patients in the interventional group were admitted to the emergency room (ER) less frequently than in the standard care group (34% vs 41%, respectively;P= .02), and were hospitalized less frequently (45% vs 49%;P= .08).

Moody used Ontario’s experience with integrating PROs into clinical practice and the benefit of it as an example, as Ontario has the largest symptom management database in the world.

Of patients in Canada who submitted an assessment of severe or worsening symptoms, especially regarding feelings of overall worsening wellbeing, the odds were high that those patients would visit an ER within 7 days of the assessment (odds ratio [OR] for wellbeing, 1.9; 95% CI, 1.5-2.4).3Patients experiencing moderate to severe nausea, drowsiness, and shortness of breath were more likely to visit the ER (adjusted OR, 1.2-1.5).

“Patients are trying to tell us something when they answer the overall wellbeing score, because when you look at the odds ratio of them ending up in an ER it’s about 1.8 with severe wellbeing concerns,” Moody said. “These patient-reported outcomes are subjective perceptions from the patient but that’s very important because that’s a vehicle to have a conversation as a clinician with your patients.”

Ontario has developed symptom management tools and products to enable clinicians and patients to benefit from PRO information, including guides to algorithms for management based on the symptom and severity; measurements for fatigue, pain, anxiety, etc.; and patient-specific guides to symptom management.

While she noted that there are challenges as to the implementation science for bringing PROs into clinical practice, Moody stressed that it’s important for the community to look into this more robustly for the benefit of patients.


  1. Howell D, Molloy S, Wilkinson K, et al. Patient-reported outcomes in routine cancer clinical practice: a scoping review of use, impact on health outcomes, and implementation factors.Ann Oncol.2015;26(9):1846-1858. doi: 10.1093/annonc/mdv181.
  2. Basch E, Deal AM, Dueck AC, et al. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment.JAMA.2017;318(2):197-198. doi: 10.1001/jama.2017.7156.
  3. Barbera L, Atzema C, Sutradhar R, et al. Do patient-reported symptoms predict emergency department visits in cancer patients? A population-based analysis.Ann Emerg Med.2013;61(4):427-437.e.5. doi: 10.1016/j.annemergmed.2012.10.010.
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