Xin Shelley Wang, MD MPH
Department of Symptom Research, The University of Texas MD Anderson Cancer Center

When patients with cancer are treated with radiation therapy (with or without chemotherapy), more than half will develop moderate to severe therapy-induced symptoms by the time they complete their treatments. These symptoms are at their worst at the time treatment is completed, far exceeding symptom levels at the start of therapy. Similarly, we found in a previous study of patients with head and neck cancer that two-thirds will have developed multiple symptoms by the time they complete their radiation or chemoradiation therapy, such that they might not be able to eat or even drink. Moreover, these patients are not routinely monitored afterward so that their conditions and needs can be managed; the recommended “solution” for unbearable symptoms is to go to the local emergency room.

Clearly, this is an untenable approach. In the current age of electronic health monitoring, a patient-care pathway that includes clinically meaningful symptoms that compromise patient functioning and quality of life could easily be implemented into routine clinical care. To lead to easier implementation, this pathway must be thoughtfully constructed and not unduly burdensome to the care team or to patients. Such a pathway could guide clinicians in handling the multiple challenges that patients face, not only in the clinic, but also when patients are on their own after discharge from therapy. Electronic capture of patient-reported outcomes (ePROs) is well established nowadays and can be done from anywhere.

Toward resolving this situation for patients with head and neck cancer, we conducted a study to identify the most-severe symptom burden reported by patients during the 8 weeks after radiation or chemoradiation therapy was completed. Twice a week during the 8-week study period, 49 participants completed the MD Anderson Symptom Inventory for HNC (MDASI-HN) to rate their symptoms and the degree to which those symptoms interfered with daily activities. The MDASI-HN includes 13 core symptom items applicable to all cancers, 9 HNC-specific items, and 6 items measuring symptom interference with functioning, all within the past 24 hours. We also collected patient ratings of their quality of life and health status, along with information from the medical record regarding difficulty swallowing and mucositis (when the mouth or gut is sore and inflamed).

At the end of the therapy, approximately two-thirds of patients reported the following as their most-severe symptoms: mucus, difficulty swallowing, lack of appetite, change in how things taste, and pain. We found that these symptoms consistently remained the worst throughout the following 8 weeks. These symptoms directly affected patients’ daily functioning and quality of life, and thus they should be considered clinically meaningful to future patient care in the posttherapy recovery period. The 5 symptoms identified here provide clear targets for monitoring, triage, and management.

Implementing ePROs in real-world practice for oncology care has been challenged by many in the ISOQOL community. One critical knowledge gap is how to select appropriate PRO data that can be used to build a pathway for a given group of patients, and then how to assemble a pathway that is workable and not burdensome for both patients and professionals. We believe that this study is a critical first step toward developing the best pathway for managing posttreatment adverse effects for patients with head and neck cancer, in that it identified a simplified list of the most critical symptoms of concern. The process we used is highly flexible and can be deployed to identify the crucial symptoms related to any cancer type or treatment modality. Posttreatment care pathways focused on just a few critical symptoms should be manageable for all involved and will enhance patient outcomes and quality of life—a win-win solution.

Abstract will be presented in Thursday Poster Session I on Thursday, 19 October, 10:05 am – 10:45 am. 

This newsletter editorial represents the views of the author and does not necessarily reflect the views of ISOQOL. 

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The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

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