Patient self-reports of symptoms and quality-of-life issues are valuable at every point in the continuum of cancer care.
—Ethan Basch, MD
Incorporating patient-reported outcomes into the palliative care clinical setting can improve patients’ symptom management, quality of life, and overall communication with their oncologists, according to Ethan Basch, MD. Dr. Basch is Director of the Cancer Outcomes Research Program and Associate Professor of Medicine at the University of North Carolina’s Lineberger Comprehensive Cancer Center in Chapel Hill, and has conducted research in patient-reported outcomes, drug regulatory policy, and comparative effectiveness research.
Two years ago, Dr. Basch and his colleagues developed guidance for integrating patient-reported outcome performance measures into the design of clinical trials1 to ensure that data collection include patients’ directly reported experiences to improve the quality of clinical research in health-care decision-making. In addition to being used in clinical trials, responses from patient-reported outcome questionnaires measuring patients’ symptoms (such as nausea and pain), physical functioning (such as difficulty climbing stairs or walking), and mental health (such as anxiety and depression) are also used to evaluate hospital performance.
The ASCO Post talked with Dr. Basch about how patient-reported outcome measures can be utilized in palliative care clinical practice to assess symptoms caused by cancer and/or its treatment.
Please talk about how patient-reported outcome performance measures are used in the palliative care setting.
Patient self-reports of symptoms and quality-of-life issues are valuable at every point in the continuum of cancer care. Exactly how patient-reported measures to assess drug toxicity and symptom severity will be incorporated into palliative care services remains to be seen. The overriding point is that there should be some approach in place to make use of patient-reported information to get patients the most appropriate support services at every stage of their care.
Among patients who have advanced or metastatic cancers, drug side effects and functional status impairments are common. Patients often have these experiences while they are away from the clinic, and unfortunately these experiences frequently go undetected by providers. Quite a bit of evidence shows that introducing patient-reported outcomes into clinical practice improves patients’ symptoms, quality of life, and their functional abilities. As a result, patient satisfaction improves and, overall, there is more efficient and accurate communication between patients and their providers.
It is also important to continue collecting this information throughout survivorship. For example, we are only beginning to understand how many patients with localized prostate cancer suffer long-term sexual side effects or urinary problems after prostatectomy or radiation therapy. So even when patients are purportedly cured of their cancer, they may live lifelong symptoms related to their disease or treatment.
It might be helpful to integrate patient-reported outcome measures into survivorship care plans as well. There are many reasons to continue to monitor survivors, including the detection of disease recurrence. Beyond that, we have to manage how people feel over the long term.
How widely used are patient-reported outcome measures in clinical care?
There is increasing interest, but generally it is limited to individual providers or practices rather than at the institutional level. That said, there is a burgeoning interest in patient-reported outcomes to enhance clinical care and to measure quality of care delivery.
How are assessments made about a patient’s symptoms or functional status? Are the questionnaires completed during the office visit?
There are different strategies being developed. Increasingly, there is interest in collecting this information electronically. Some of the major electronic health record vendors have designed patient portals that include the ability to send electronic questionnaires to patients and capture their responses in the medical record. For example, before the office visit, either while at home or in the waiting room, patients could answer questions about their symptoms or problems they may be having, which could then be addressed during the visit.
Another strategy being explored is monitoring patients between visits. Out of sight, out of mind has been the rule in health care, but evolving technologies promise to give us non–real-time ability to interact with our patients and respond to their concerns between office visits.
An example of that would be an automated system that makes phone calls or sends e-mails to patients every week or two, reminding them to report any problems they may be having. If anything in their [patient-reported outcomes] report includes a significant change in symptom severity or functional or mental health status, a message would be sent to a nurse on the medical team and the patient would get a phone call to be triaged.
There are a couple of types of symptom scales to determine patients’ physical and mental health, including numeric scales of 0 to 10 that ask patients to describe their levels of pain, fatigue, nausea, etc, and verbal descriptor scales. Verbal descriptor scales might ask patients to describe how intense—from mild, moderate, and severe, to very severe—their symptoms are.
While symptom monitoring and managing is something we already do, [patient-reported outcomes] increase the fidelity and efficiency of the information collected and allow us to be more patient-centered in the way that we monitor and manage symptoms.
How effective are patient-reported outcomes in assessing mental health issues?
Providing sufficient mental health services in cancer care is a substantial problem. Oncologists and oncology nurses often are not specifically trained to detect or manage anxiety and depression in patients. Sometimes it is challenging to understand the extent to which a patient’s mood is an appropriate response to his or her diagnosis, as opposed to a problem beyond this level that may be interfering with the patient’s ability to function.
We know from monitoring levels of depression and anxiety that questionnaires like the Patient Health Questionnaire (PHQ)-9 are better at precisely identifying the magnitude of some mental health problems compared to non–mental health clinicians. These questionnaires can enhance existing care approaches.
Often, we don’t have adequate time at medical oncology visits to conduct a thorough assessment of these issues. By integrating a questionnaire as a screening tool, for example, if a patient scores high on the PHQ-9 questionnaire for depression and anxiety, the physician or nurse can recommend further clinical assessment and perhaps a referral to psychiatric services.
As mental health care becomes increasingly folded into oncology practice and palliative care services, we can develop pathways within an institution where mental health assessment is fairly systematic. We know that anxiety and depression are common among our patients, and when we think about providing comprehensive palliative care, psychosocial support and mental health services are an important piece of that. ■
Disclosure: Dr. Basch reported no potential conflicts of interest.
1. Basch E, Abernethy AP, Mullins CD, et al: Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. J Clin Oncol 30:4249-4255, 2012.
Addressing the evolving needs of cancer survivors at various stages of their illness and care, Palliative Care in Oncology is guest edited by Jamie H. Von Roenn, MD. Dr. Von Roenn is ASCO’s Senior Director of Education, Science and Professional Development Department.