“Symptom science is an important area of research that can greatly impact the lives of people with and survivors of cancer,” said Marilyn J. Hammer, PhD, DC, RN, FAAN. 

Hammer, of the Dana-Farber Cancer Institute in Boston, MA, presented “What’s Next? Advancing Oncology Symptom Science Research” alongside Christine Miaskowski, RN, PhD, FAAN, of the University of California San Francisco; Marianne Davies, DNP, MSN, RN, APRN, CNS-BC, ACNP-BC, AOCNP^®, of the Yale School of Nursing in Orange, CT; and Susan W. Wesmiller, PhD, RN, of the University of Pittsburgh in Pennsylvania, making recommendations for the next area of focus for oncology nursing symptom management research.

Their recommendations are based on ONS’s 2019–2022 Research Agenda. Other research priorities identified in the agenda are disparities, and palliative and psychosocial care, with cross-cutting themes of aging, survivorship, healthcare delivery, and methodologies. The speakers explained that the research agenda offers research guidance for each priority area, based on the current state of the science and evidence gaps.

A Focus on Patient Needs

They explained that scientists need to develop, test, and refine reliable, valid, and sensitive tools to capture PROs and treatment experiences in patients receiving immunotherapy and to link those measures to clinical decision support resources and treatment pathways to improve clinical outcomes. Another research focus is the ability to characterize variability in presentation, trajectory, and management of the irAEs across various patient populations. 

Immune checkpoint inhibitor (ICI) therapies are a research priority because so many new agents have received U.S. Food and Drug Administration approval recently, Hammer et al. explained. Although ICI therapies have been associated with numerous adverse events, which are graded and reported by clinicians using the National Cancer Institute’s Common Terminology Criteria for Adverse Events, there are significant gaps in the grading, reporting, and attribution of irAEs of patients undergoing ICI treatment.

How Symptom Science Can Change the Patient Experience

Hammer et al. said that research data are lacking on changes in symptoms, quality of life, physical function, and cognition using tools that are specific to the unique symptom and irAE profile associated with ICI therapies, and the patient experience has been mostly captured using generic instruments. Patient populations have interindividual variability in irAEs, and PROs specific to immunotherapy are needed to link treatment experiences with clinical treatment and care.

They also identified a need for real-time reporting of irAEs, including automated hovering, which involves remote yet constant engagement and evaluation rather than the current practice of retrospective reporting at visits.

Other recommendations were to examine factors (e.g., age, gender, diet, weight, exercise, stress, sleep patterns) that may influence responses to ICI therapy and irAE development across patient populations and over time and to conduct randomized trials to test the efficacy of supportive care interventions to alleviate irAEs. Although irAE clinical practice guidelines have been developed, they are mostly based on a consensus of clinical expert opinion rather than empirical evidence.

For precision health and biosignatures, recommendations include identifying the optimal approaches to characterize patients’ and survivors’ symptom profiles and their associated genotypes and phenotypes, determining optimal methodologic approaches to predict patients and survivors at greatest risk for symptom burden, and establishing the biosignature (i.e., phenotypic and molecular characteristics) of common individual symptoms and symptom clusters in patients and survivors.

Nurse Scientists Can Change the Research Trajectory

More information is needed about the phenotypes of individuals with stable symptoms, those of individuals whose symptoms change over time, and those of survivors with symptom burden, Hammer et al. said. Studies also are needed to characterize the symptom experiences of patients with cancer in different age groups, with different types of cancers and treatments, and at various stages across the cancer journey.

Nurse scientists can define individual biosignatures through the use biomarkers and integrative “-omics,” as well as lifestyle, environmental, and psychosocial factors, obtaining the information through self-report, biomarker measures, and tools like wearable devices and genomic or epigenomic analyses.

According to the presenters, a precision health perspective can help researchers define individual biosignatures that characterize symptom experiences, giving clinicians the evidence they need to develop and implement tailored interventions to improve quality of life and outcomes for patients with cancer.

They noted some best practices for conducting symptom science research, suggesting that there must be consensus among oncology nurse scientists in terms of how variables are measured, how data are collected, and how data are analyzed. The use of large data sets that include biological determinants may help to fill the gap in knowledge related to identifying patients at risk for a higher symptom burden.

The challenge remains in ensuring that the best evidence is generated and that methodologically complex findings are translated into usable evidence, particularly given the increasingly individualized nature of this area of research, the presenters said.