Year: 2018
Type: article
Abstract: “Today is only one day in all the days that will ever be. But what will happen in all the other days that ever come can depend on what you do today.” — Ernest Hemingway “For Whom the Bell Tolls” According to the National Cancer Institute, ‘An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life’.1 As of January 2016, it is estimated that nearly 5% of the population of the United States are cancer survivors, and the number is expected to continue to increase, especially in those over age 65. Essential components of cancer survivorship care have been outlined by the Institute of Medicine and include2: • Prevention of new and recurrent cancers and other late effects • Surveillance for cancer spread, recurrence, or second cancers • Assessment of late psychosocial and medical effects • Intervention for consequences of cancer and treatment (e.g., medical problems, symptoms, psychologic distress, and financial and social concerns) • Coordination of care between primary care providers and specialists to ensure that all of the survivor’s health needs are met. To date, the primary population of research and clinical focus in survivorship has been in malignancies other than primary central nervous system (CNS) tumors. This is further highlighted by the results of a search of the Division of Cancer Control and Population Sciences funding history, which showed that 565 cancer survivorship grants were funded in the last five years, but only one was funded in adult neuro-oncology related to identification of biomarkers associated with extended survival.1 This lack of focus on CNS cancers may be partially a result of provider perspective being influenced by dismal prognosis with the diagnosis of malignant glioma as well as the unrelenting nature of the disease and also the relative rarity of primary CNS tumors. This has the consequence that the acute focus in neuro-oncology is on understanding the disease and finding a therapeutic cure. Traditionally in neuro-oncology, we also do not align with nomenclature used in general oncology. As an example, the word ‘remission’ is not commonly used when referring to patients with CNS tumors. By definition, ‘remission’ is used to describe patients with cancer control after therapy, and the definition also includes ‘a decrease in or disappearance of signs and symptoms of cancer’. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body’.3 In neuro-oncology, patients often continue to have an abnormality on imaging, have unrelenting neurologic symptoms or functional limitations, and require frequent imaging surveillance, even when not on treatment, making use of this term less aligned with the reality of the disease. We are also often reticent to apply other concepts related to patient care – such as ‘cure’ and ‘survivorship’– but this is changing. A precursor to this change in outlook has been the reported survival in glioblastoma of nearly 10% at 5 years.4 More recently, a Neuro-Oncology Adult Survivorship Care Plan was developed and endorsed by the Society for Neuro-Oncology (SNO) for care of neuro-oncology patients.5 The overarching goal of this supplement is to provide an overview of the current state of the science related to select essential components of survivorship care in the neuro-oncology patient population in order to guide care but also as a call to action for increased focus and inclusion of these critical issues in research funding and focus. The first two manuscripts in this supplement focus on the first two tenets of survivorship care: prevention of new and recurrent cancers and other late effects and surveillance for cancer spread, recurrence, or second cancers. In the first article in this supplement, Dr Barnholtz-Sloan and colleagues from the Central Brain Tumor Registry of the United States (CBTRUS) report on the prevalence of primary CNS tumors. An essential component of survivorship care is to consider not only the annual incidence of a cancer but also the prevalence of patients living with a diagnosis in order to identify the magnitude in terms of number of people impacted. In the second paper of this supplement, Dr. Brastianos and colleagues provide an overview of current knowledge of identified glioma subtypes and discuss the implications for both development of these tumors and the potential for recurrence. Tremendous effort has resulted in advancing our understanding of the molecular underpinnings of gliomas – to the extent that molecular subtyping is used in many primary brain tumors for diagnosis – and in defining clinical course of the disease, responsiveness, and length of life. The last two articles in the supplement focus on the other three tenets of survivorship care: assessment of late psychosocial and medical effects; intervention for consequences of cancer; and treatment and coordination of care. This is critically important, as in addition to understanding the magnitude and identification of biomarkers of survival, it has been established that many systemic cancer survivors experience physical and/or psychosocial side effects that can be severe, debilitating, and sometimes permanent and impact the individual, their family, and society. Identification of these effects and symptom management are essential components of survivorship care. The last two articles provide an overview of survivorship and psychosocial care planning and symptom management in neuro-oncology. Dr. Amidei provides a review of identified long-term outcomes, including psychosocial and symptom management strategies for the CNS tumor population. In the final paper, Drs. Leeper and Milbury provide information related to methods and tools to facilitate provision of survivorship care in neuro-oncology, including the importance of consideration of the patient-caregiver dyad in providing care. Ultimately, in order to improve survivorship in neuro-oncology, we not only need to understand the biological underpinnings and to develop effective therapies but also to identify the key elements of survivorship care specific to those with CNS cancers. Aligned with the quote from Hemingway that what we do today impacts tomorrow, consideration of the long-term impact and focus on improving psychosocial, symptomatic, and functional outcomes will be necessary to improve survivorship from the time of diagnosis throughout the illness trajectory. Supplement sponsorship. This supplement was funded through an independent medical educational grant from AbbVie.
Source: Neuro-Oncology
Author: Terri S Armstrong
Language: English
Topic: Cancer survivorship and care
Subfield: Oncology
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W2899776365