About COPAL CNS

What is palliative care?

Palliative care is, in its purest form, the art of alleviating suffering. It is specialized care that focuses on providing relief from the symptoms and stressors of living with serious illness. The goal of palliative care is to improve the quality of life for patients facing serious illnesses. It addresses physical, emotional, social, and spiritual needs and aims to help patients and their families navigate the challenges associated with the illness. Palliative care can be provided alongside curative treatment and is not limited by prognosis or stage of the disease. Palliative care is NOT the same as hospice care or end of life care.

What are CNS cancers?

Any cancer that affects the brain and/or spinal cord is considered to be within the central nervous system or CNS.

What are patient reported outcomes?

Patient-reported outcomes (PROs) are assessments of a patient's health status that come directly from the patient themselves, without interpretation by a clinician or anyone else. These outcomes capture information provided by patients about their symptoms, functional status, health-related quality of life, and overall well-being. PROs are important in healthcare because they provide valuable insights into how patients perceive their own health and how they are affected by a particular condition or treatment. PROs are often used in clinical research, clinical practice, and healthcare policy to assess the impact of interventions on patients' lives and to make informed decisions about patient care.

What is a core outcome set?

A core outcome set (COS) is an agreed-upon minimum set of outcomes that should be measured and reported in all clinical trials or studies for a specific health condition or intervention. The aim of developing a core outcome set is to standardize the outcomes that are assessed across different studies, making it easier to compare and combine results from various research studies. By defining a core outcome set, researchers, clinicians, patients, and other stakeholders can ensure that the most important outcomes are consistently measured and reported, reducing outcome reporting bias and improving the relevance and quality of research findings. Core outcome sets are typically developed through a consensus process involving key stakeholders to identify and prioritize the outcomes that matter most to patients and other decision-makers. In this project, we are using the Delphi Process to create this COS.

Who is part of this effort?

We have made an intentional effort to make this effort as international and multidisciplinary as possible. The stakeholder group at this time includes clinicians (neuro-oncologists, radiation oncologists, medical oncologists, palliative medicine specialists, neurosurgeons, neuropsychologists, nurses), researchers (including epidemiologists, statisticians, and others who have dedicated their life’s work to research in this area), and consumers (patients, care partners, advocacy groups and those representing the needs of the brain tumor community). Members span from across continents from the Americas, Europe, Australia, Africa, and Asia.

It is important to note that this work uses and builds upon PCORI-funded work done by the National Brain Tumor Society (NBTS) to establish a Brain Tumor Quality of Life Research Agenda for patients, caregivers, researchers, health care providers, organizations, insurers, policymakers and funders (pending publication).