Closing the clinician–patient gap with patient-reported outcomes

ESMO 2019

Cancer has dozens of common symptoms and adverse events—such as pain, fatigue, nausea, vomiting, neuropathy, mouth sores, appetite problems, taste problems, anxiety and sleeplessness—which may be interpreted differently by patients and healthcare professionals. Patient-reported outcomes (PROs) that focus on symptoms and quality of life (QoL) are very important to improve cancer care and may help to re-align the major concerns and needs of patients to the perspectives of healthcare professionals.

PROs encourage patient-centred care. “Sometimes, patients need encouragement to describe their symptoms. They may be hesitant to do so for several reasons, including a reluctance to be perceived as complaining, or fear that treatment will be discontinued. Systematic tracking of PROs can help patients and clinicians to partner so that they stay on top of symptoms, which in turn can improve treatment effectiveness and the patient experience,” explains Prof. Deborah Schrag from the Dana-Farber Cancer Institute/Harvard Medical School, Boston, MA, USA, who will discuss the ‘Relevance of patient reported outcomes’ at the Challenge your Expert Session this afternoon (15.00 – 16.00, Toledo Auditorium [Hall 5]). “In turn, clinicians can reassure patients that there are ways to address these symptoms. Also, during treatment, healthcare teams can tell patients what symptoms to expect, how long these are likely to last and suggest coping strategies.”

Having a convenient way of recording patient-reported outcomes can help patients to better-describe their symptoms, not just in the clinician’s office, but also when patients are at home.

As cancer survival rates increase due to advances in preventative strategies, diagnostic tools and treatments, PROs are likely to play a central role in the future of cancer care. Cancer survivors can experience a variety of problems related to the disease itself or its treatment, and these issues may continue to have a detrimental impact on patients during or immediately after treatment, or even many years later. “We need to pay greater attention to survivorship and exactly how patients will survive, not just focus on their treatment,” says Prof. Manuela Eicher from the University of Lausanne, Switzerland, an oncology nurse whose research is focussed on supportive care in cancer. QoL in survivorship is the focus of today’s ‘Surviving a cancer diagnosis’ Educational Session (08.00 – 10.00, Santander Auditorium [Hall 3]). Eicher continues, “We have strong evidence to show that oncology healthcare professionals underestimate the impact that the symptoms and adverse events of cancer and its treatment have on patients’ lives. The inclusion of PROs in clinical care can help us identify what is important for their symptom management and, more broadly, QoL, and set the basis of future clinical decision making.”

Recently, efforts have been made to integrate PRO data into patient electronic health records, although research is ongoing regarding the most appropriate way of doing this. While technological advances provide numerous means of recording PROs, combining the information into a single, convenient record can be problematic.

“We can easily record PROs with various gadgets and apps, but more important than this is having supportive care expertise to provide relevant information and education, including coaching,” comments Schrag. “Good supportive care includes nurses with expertise in symptom management—sometimes called nurse navigators—who are skilled at coaching patients and addressing symptoms early, before they escalate and require acute care.” Schrag thinks that this can encourage patients to feel empowered and optimistic, which contributes to their overall sense of wellbeing. “In my clinical practice, I have found that the majority of patients are open and receptive, and immediately recognise the value of reporting their symptoms because they understand that this may help them feel well,” concludes Schrag.