No abstract

In response to the need for linguistically and culturally appropriate cancer survivorship materials for Latinos, the Office of Education and Special Initiatives and the Office of Cancer Survivorship at the National Cancer Institute (NCI) set out to test, adapt, and refine a Spanish translation of an English-language booklet for adult cancer survivors titled Facing Forward: Life After Cancer Treatment (Siga adelante: la vida después del tratamiento del cáncer). The authors used a process called "transcreation," which involves translating existing English-language materials into Spanish and then adapting them for Latino audiences. The Spanish version of the booklet was reviewed by nine Spanish-speaking reviewers who were cancer survivors. The multistage transcreation process reinforced the importance of conducting formative research as well as adjusting the methodology to address the needs of changing demographics.

An important and often overlooked subpopulation of cancer survivors is individuals who are diagnosed with or progress to advanced or metastatic cancer. Living longer with advanced or metastatic cancer often comes with a cost of burdensome physical and psychosocial symptoms and complex care needs, however research is limited on this population. Thus, in May 2021, the National Cancer Institute convened subject matter experts, researchers, clinicians, survivors, and advocates a for a 2-day virtual meeting. The purpose of this report is to provide a summary of the evidence gaps identified by subject matter experts and attendees and key opportunities identified by NCI in five research areas: epidemiology and surveillance, symptom management, psychosocial research, healthcare delivery, and health behaviors. Identified gaps and opportunities include the need to develop new strategies to estimate the number of individuals living with advanced and metastatic cancers, understand and address emerging symptom trajectories, improve prognostic understanding and communication between providers, patients, and caregivers, develop and test models of comprehensive survivorship care tailored to these populations, and assess patient and provider preferences for health behavior discussions throughout the survivorship trajectory. To best address the needs of individuals living with advanced and metastatic cancer and to deliver comprehensive evidence-based quality care, research is urgently needed to fill evidence gaps, and it is essential to incorporate the survivor perspective. Developing such an evidence base is critical to inform policy and practice.

Human behavior is central to the etiology and management of cancer outcomes and presents several avenues for targeted and sustained intervention. Psychosocial experiences such as stress and health behaviors including tobacco use, sun exposure, poor diet, and a sedentary lifestyle increase the risk of some cancers yet are often quite resistant to change. Cancer screening and other health services are misunderstood and over-utilized, and vaccination underutilized, in part because of the avalanche of information about cancer prevention. Coordination of cancer care is suboptimal, and only a small fraction of cancer patients enroll in clinical trials essential to the development of new cancer treatments. A growing population of cancer survivors has necessitated a fresh view of cancer as a chronic rather than acute disease. Fortunately, behavioral research can address a wide variety of key processes and outcomes across the cancer controbiol continuum from prevention to end-of-life care. Here we consider effects at the biobehavioral and psychological, social and organizational, and environmental levels. We challenge the research community to address key behavioral targets across all levels of influence, while taking into account the many new methodological tools that can facilitate this important work.

There is considerable evidence that a healthy lifestyle consisting of physical activity, healthy diet, and weight control is associated with reduced risk of morbidity and mortality after cancer. However, these behavioral interventions are not widely adopted in practice or community settings. Integrating heath behavior change interventions into standard survivorship care for the growing number of cancer survivors requires an understanding of the current state of the science and a coordinated scientific agenda for the future with focused attention in several priority areas. To facilitate this goal, this paper presents trends over the past decade of the National Cancer Institute (NCI) research portfolio, fiscal year 2004 to 2014, by funding mechanism, research focus, research design and methodology, primary study exposures and outcomes, and study team expertise and composition. These data inform a prioritized research agenda for the next decade focused on demonstrating value and feasibility and creating desire for health behavior change interventions at multiple levels including the survivor, clinician, and healthcare payer to facilitate the development and implementation of appropriately targeted, adaptive, effective, and sustainable programs for all survivors.