Despite improved outcomes with new treatment and targeted therapies, patients with cancer continue to be afflicted by distressing symptoms and serious toxicities, which affect daily functioning and quality of life.
Donna Berry, PhD, RN
Despite improved outcomes with new treatment and, especially, targeted therapies, patients with cancer continue to be afflicted by distressing symptoms and serious toxicities, which affect daily functioning and quality of life. Symptom burden is notable during therapy and can persist long after treatment. The patient and family experience is dominated by coping with symptom distress, including fatigue, gastrointestinal disturbances, and pain.
At the beginning of treatment, clinicians can provide patients with a variety of prescriptions for symptom prevention and treatment, as well as written educational materials on symptom management. When symptoms are not well controlled, patients must reach out to clinicians for additional help. Yet, there is evidence that patients do not always call, and symptom burden remains significant. Follow-up visits are constrained by limited available time. To make matters worse, clinicians are known to underestimate symptoms experienced by patients with cancer. Poorly controlled symptoms can result in emergency department (ED) visits, unplanned hospitalizations, delays in treatment, and lack of adherence to an effective treatment course.
Quality cancer care requires a focus not only on the tumor but also on the illness experience for patients and their families. The patient’s perspective on what constitutes value is central to improving quality. Studies have shown that cancer symptom monitoring and self-care support significantly improve survival1 and alleviate depression2 and symptom distress.3 However, patient experience, including symptom presence and severity, has not been tracked or documented in electronic health records (EHRs) as systematically as serum lab values and tumor markers have.
Adding patient-reported outcomes (PROs) to routine clinical care is certainly possible by using contemporary EHRs with patient portals, which benefit patients by providing access to information about appointments, test results, and prescriptions. Incorporating PROs, as well, requires significant planning, logistics, and adjustment in care delivery practices. Low vendor and institutional priorities for integration of PRO data into EHR systems, lack of payment for implementing and monitoring PROs, and lack of effective processes for integration into the clinical care workflow all present barriers to consistent tracking.4
Prompting patients to report symptom distress between and prior to face-to-face visits can improve the quality of life, save lives, and reduce costly ED visits. Having the PROs available before walking into the exam room enables the clinician to focus on the assessment and avoid a game of 20 questions, during which many patients will deny existing issues. A variety of validated cancer-symptom questionnaires are available.1,3,5 The choice will depend on the setting and treatments, as well as the need to avoid burdening patients with too many questions or, conversely, failing to cover the important issues sufficiently. Practices may want to tailor online questionnaires to specific treatment regimens. How frequently patients are asked to report symptoms must be considered. If the PROs will be used only for care while a patient is on therapy, then an assessment within 24 hours prior to each clinic visit, plus the receipt of weekly patient-generated reports from home between visits, will help catch serious issues. However, if PROs will also be used for analyses of aggregate data, then a uniform, date-specific approach may be warranted (eg, pretreatment, monthly for the first year).
That monitoring could be achieved with a common technology: the patient portal component of an EHR. There are at least 5 requisites for implementation success: Patients must enroll to use the portal, the interface must be usable by patients of all literacy levels, clinicians should state the expectation that patients will use the portal to enhance communication, clinician response must be consistent and reliable, and a champion for implementation must oversee access and response metrics. The long-term results can certainly be beneficial, given careful planning and implementation.