New study explores how to implement patient-reported outcomes in routine cancer care

May 31, 2019

Patients with cancer increasingly are being asked to complete standardized questionnaires that inquire about their symptoms, functioning and well-being as part of routine care. Randomized trials have found that these patient-reported outcomes (PROs) improve communication between patients and clinicians, increase patients’ quality of life and satisfaction with care, and reduce emergency room visits for uncontrolled symptoms.

Dr. Angela Stover

Clinicians agree that PROs have the potential to promote a more patient-centered, personalized care model. However, adoption of PROs in cancer care has been slow. Angela Stover, PhD, assistant professor in the health policy and management department at the UNC Gillings School of Global Public Health and an associate member of the Lineberger Comprehensive Cancer Center, wanted to understand how to better engage patients and clinicians. She is first author of a recent study that details stakeholder engagement activities that could overcome barriers to implementing PROs.

The study – Using Stakeholder Engagement to Overcome Barriers to Implementing Patient-reported Outcomes (PROs) in Cancer Care Delivery: Approaches from 3 Prospective Studies – is part of a 14-article supplement published in the journal Medical Care that compiles best practices for applying PROs in health care settings.

“My research program seeks to understand how we can help practices and clinics implement PROs into their workflow and sustain it over time,” explained Stover. She began her research career twenty years ago as a symptom questionnaire developer for National Institute of Health studies, and has since become an expert in the study of PROs.

Stover and her co-authors studied implementation in two different settings: PROs completed in the waiting room and reviewed during clinical visits (visit-based PROs); and PROs completed by cancer patients at home between chemotherapy visits (remote PROs). The two settings had similar, overlapping barriers to implementation that were eventually overcome with stakeholder engagement.

The researchers began by anticipating barriers to implementation at the practice, clinician and patient levels. Based on previous research, they knew that: 1. PROs need to be brief and easily interpretable; 2. that it is necessary to determine clinician and patient perceptions of which PRO responses are clinically concerning; and 3. that clinicians must have guidance on the care a patient should receive in response to a concerning symptom. Two other anticipated barriers were clinician training on a new PRO tracking system and increases in nursing workload as a result of acting on concerning PRO responses.

With an understanding of these challenges, Stover and her team outlined and tested a number of stakeholder engagement activities. They gathered clinician and patient input on the most important symptoms to assess for adults receiving chemotherapy and used that input to make sure the questionnaires addressed key symptoms.

They also obtained clinician input on which responses should be flagged for nurses to see and respond to, and what guidance that should accompany a concerning symptom alert.

“For example, if a patient marks that she is experiencing a lot of pain, what are the recommended treatment options a clinician should consider given the woman’s cancer diagnosis, treatment and stage?” Stover said.

The team trained clinicians on how to interpret PROs and use a new software system outside of their practice’s electronic health record system (EHR). They also discussed with clinicians the frequency of flagged PRO responses and the nursing actions needed to address them.

“One of the first questions I hear [from clinicians] is how much nursing time they should budget for responding to concerning symptoms,” said Stover.

This study is one of the first to track the percentage of questionnaires that result in the need for a nurse to respond by calling a patient. It found that approximately one-third of the remote-PRO weekly questionnaires required a phone call to patients to discuss symptoms. This result will help practices gauge nursing workload and staffing needs as they transition to using PROs to increase patient-centered care.

Stover hopes to use the study findings to increase the adoption of PROs in both urban and rural settings throughout North Carolina. UNC Healthcare will apply the use of PROs broadly over the next several years, starting with oncology and primary care. Stover’s team will partner with UNC Healthcare to track optimal implementation strategies.

“The next step for my research program is to determine how we can best help community and rural cancer practices in North Carolina implement PROs for all adult cancer patients, not only those who participate in trials or are treated at academic centers,” said Stover.

Contact the Gillings School of Global Public Health communications team at sphcomm@listserv.unc.edu.