Closing the information gap: Web-based PROs systems hold promise in supportive cancer care

Written by Ann Wong*

Typical care can generate an incomplete view of a cancer patient’s experiences.

Patients with cancer suffer from disease and treatment related symptoms. Many of these clinically- relevant details are often missed or forgotten as these patient-reported outcomes (PROs) are typically only discussed at clinic visits. “Prior research has shown that doctors miss up to half of patients’ symptoms during cancer treatment,” noted medical oncologist Ethan Basch Director of the UNC Lineberger Cancer Outcomes Research Program and an Associate Professor of UNC School of Medicine Division of Hematology and Oncology [1]. Symptoms can also arise from medical comorbidities, such as diabetes and chronic obstructive pulmonary disease (COPD), especially with an aging population [2].  Greater diversity of expertise is needed to address these added complexities.  Results from a comorbidity study in skin cancer patients suggest that patient-reported questionnaires may better identify any coexisting disorders (n=44; 79.5% and 88.6% by traditional medical interview and patient-reported questionnaire, respectively) even when there are discordant observations [3].

Most emergency department visits by patients undergoing cancer treatments are related to poorly controlled disease or symptoms.  Over half of these visits resulted in hospital admissions [4].  A recent Canadian retrospective study showed a 43% reduction in ER visits among chemotherapy patients completing PROs assessments between clinic visits [5].  Others have also found that remote PROs monitoring through home telehealth programs for patients with chronic diseases reduces ER and inpatient hospital costs.  For example, Centura Health has lowered readmission for congestive heart failure and COPD by about 10%, and has even reduced the readmission rate for diabetes to 0% with its telehealth intervention.  Similar saving is found by the US Department of Veteran Affairs home telehealth program on patients with a single or multiple health problems, suggesting that PROs measures are useful in handling more complex cases. [6]

Utilizing web-based questionnaires allow care teams to attain patient reported outcomes that can influence the care process

Efforts to capture and monitor these, often actionable, symptoms with standardized questionnaires directly from patients are gaining recognition in the delivery of timely, patient-centered healthcare.  Commonly used in clinical research, PROs record an unfiltered patient’s perspective of how a disease or care intervention impacts his/her health and well-being [7, 8, 9].  PROs reflect on a range of outcomes, including symptoms related to disease or toxicities, ability to function, and/or quality of life.  There has been a growing interest in expanding the use of PROs into routine cancer patient management.

The benefits of the electronic collection of symptoms from patients receiving cancer treatment in enhancing patient-provider communication and patient satisfaction have been well documented.  Recent reviews have noted growing evidences that PROs collection improves treatment response monitoring and unrecognized problem detection. However, demonstrating its impact on patient management and clinical outcomes has been challenging.  [8, 9, 10, 11]

A: Value of PROs in Routine Cancer Care

Most studies on PROs focus more on technologies [11], while many that examine its health effects center around PROs captured at clinic visits [12].  A recent clinical trial at Memorial Sloan Kettering Cancer Center (MSK) demonstrates that remote PROs collection using a web-based system enhances health-related quality of life (HRQL), reduces unexpected emergency care, and improves quality-adjusted survival [13] (see Figure for summary of results).



In brief, patients sub-grouped based on their computer experience were randomly assigned into symptoms self-reporting groups and usual care groups (n=766).  Symptom Tracking and Reporting (STAR) is a web-based symptoms tracking and reporting system that automatically emails nurses when a patient’s symptom rating is severe or disabling, or when their symptoms have worsened by 2 or more points.  Observations over 6 months showed that HRQL was more likely to improve (34% v 18%) and less likely to worsen (38% v 53%) for patients reporting symptoms between visits compared to patients only receiving usual care (P < .001).  Fewer patients in the STAR group visited the ER or were hospitalized at 1 year.  Self-reporting patients also remained on chemotherapy longer (8.2 v 6.3 months, P = .002), were more likely to survive 1 year (75% v 69%, P = .05), and had better quality-adjusted survival (8.7 v 8.0 months, P = .004).  Notably, health benefits in general were more pronounced in the computer-inexperienced subgroup.

B: Harnessing the Power of PROs

Disease and symptoms experiences are highly personal and subjective, which make them difficult for a third party to evaluate.  Accurate description of occurrence and severity of symptoms is important for the discussion of benefits and risks associated with treatments. Additionally, it provides an informed evaluation of the patient’s condition.  In conventional healthcare, clinicians have been assessing symptoms of drug toxicity as part of their routine consultations.  However, it has been reported that clinicians’ ratings of symptoms severity rarely agree with those of patients’ [14].  Physician-reported toxicity ratings were consistently lower.  As demonstrated earlier by the MSK trial, symptoms or toxicities capture via Health IT not only closes this gap, but also enables better and personalized cancer care.


Ultimately, we see the potential of routine PROs assessments as a driving force to improving precision and patient-centered cancer care.  PROs provide valuable information that is meaningful to individual patients, allowing healthcare providers to tailor their responses and treatment to the right patient at the right time.

*Ann Wong has a PhD in Biochemistry and Molecular Biology from the  Faculty of Medicine at the University of British Columbia (UBC), Canada. She is an author of over 10 SCI publications, having taught at UBC and the Peking University Health Science Center (PUHSC) in Beijing. 

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