BOSTON – What clinicians see and what patients feel may be two different things, but optimal care for patients with cancer depends on smooth two-way communication between patients who are sometimes afraid to be a bother, and caregivers who sometimes fail to pick up on patient distress, said an investigator who studied patient-reported outcomes.

“We really have a propensity to underestimate symptoms – not only the incidence, but also the severity of the symptom, and also what type of distress that symptom is causing for that individual patient,” said Jeannine M. Brant, Ph.D., an oncology nurse specialist and nurse scientist at the Billings (Mont.) Clinic. “We need to incorporate PROs [patient-reported outcomes] into our clinical practice,” she said at the inaugural American Society of Clinical Oncology (ASCO) Palliative Care Symposium.

She and her colleagues were recently surprised, she said, when an otherwise healthy-looking rectal cancer survivor, an avid runner, reported having a high level of distress due to unpredictable bouts of diarrhea and fatigue. The patient said she had not reported the symptoms earlier because they seemed to be “a small trade-off for having my life back.”

With the help of the support team, which provided nutritional consultation and antidiarrheal agents, the patient was soon back on her feet and running again, and reported a high quality of life.

The case “points out the need to ask patients about their symptoms, because if we don’t ask about them, we’re not going to know what they’re experiencing,” Dr. Brant said.

ASCO’s Quality Oncology Practice Initiative (QOPI) calls for starting the PRO process before the first administration of a new chemotherapy regimen. In addition, it calls for an assessment of the patient’s psychosocial concerns and needs, with appropriate action taken when indicated, at each clinical visit or treatment day during a chemotherapy regimen.

Barriers to PROs

Patients may be selective about what they report to their caregivers, with reasons that may include the desire to be a “good” patient, willingness to exchange some discomfort or unpleasant symptoms for better disease control, a fear that their symptoms might halt or interrupt their treatment, limited time spent with their clinicians, the perception that nothing can be done to control symptoms, or sheer embarrassment.

On the clinical side, physicians and nurses may have gaps in their knowledge and attitudes about symptoms, or may fail to ask because they are short on time and are concerned that having a discussion of symptoms will “open a can of worms” that they will then have to deal with. Additionally, clinicians may be hampered by the lack of a consistent process for integrating PROs into the electronic health records, Dr. Brant said.

There are currently several electronic platforms that can help to automate and simplify the PRO report process. In general, the systems allow patients to report physical, social, functional, and quality of life symptoms, and help clinicians assess satisfaction with treatment, how well the patient is coping, and treatment adherence. Some systems offer tips to patients about what to report and how to best frame it during their clinic visit.

Capturing toxicities

The National Cancer Institute is currently developing a PRO version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE), to be used in tandem with the CTCAE, Dr. Brant noted.

Drawing on a symptoms library of 78 adverse events from the CTCAE, the PRO-CTCAE contains questions for evaluating symptom occurrence, frequency, severity, and interference. Patients can respond online, with computer tablets, or via an interactive voice response telephone system. Based on the responses, the system can assign a severity grade and record events for review by clinicians.

“This is looking at the patient experience and not trying simply to decide what the patient is experiencing as a result of a drug,” Dr. Brant said.

Automated care plan

Dr. Brant also described her experience with a semiautomated care planning system (On Q), which uses patient-reported data and clinical data to generate a customized draft patient care plan incorporating oncology quality standards, guidelines, and current research.

The system can generate supportive care plans that offer specific recommendations about distress screening, survivorship care, surveillance, and follow-up.

In a pilot study of the system with 23 breast cancer patients at the H. Lee Moffitt Cancer Center & Research Institute in Tampa, and 18 patients with gynecologic cancers at the Billings Clinic, more than 90% of patients reported being satisfied with the system and said they would recommend it to others. Patients received a copy of the care plan on a flash drive or on paper if they preferred.

One patient commented that “the care plan reminds you to bring up issues, guides the discussion, and gives doctors a better overall picture of what’s going on with you.”

The study funding source was not reported. Dr. Brant disclosed receiving honoraria and serving on the speakers bureau of Genentech.

Patient-reported outcomes drive palliative care