For the last three years, the Society for Neuro-Oncology has included an educational session focused on issues of quality of life (QOL) at its annual meeting. The enthusiastic response to these sessions has made it clear that there is a significant interest in applied neuro-oncology and that research efforts in this area need to be encouraged and supported. The goal of this special issue of Neuro-Oncology is to highlight the importance of evaluating the effects diagnosis and treatment have on patients and caregivers, other than those relating to survival, and the critical need to create a global effort to study QOL through prospective research. This issue is a collaboration by contributors from the Society for Neuro-Oncology, the European Association of Neuro-Oncology, and the Asian Society for Neuro-Oncology, providing us an opportunity to share experiences across different medical systems and societies and learn from the international neuro-oncology community. I would like to formally thank and acknowledge my co-editors, Drs. Masao Matsutani, Jeffrey Wefel, and Riccardo Soffietti for contributing their expertise in making this edition possible, and to thank the authors and peer reviewers for their time and effort.
In the United States, medical management for all diseases is increasingly being tied to measures of quality. The U.S. Food and Drug Administration has approved drugs based not only on their ability to extend lifespan, but also to relieve suffering. The National Cancer Institute has launched the Family Caregiver Project to train nurses, social workers, physicians, and other members of oncology care teams how to improve support for caregivers. QOL is now a secondary endpoint for many national and international brain tumor clinical trials and is the focus of primary evaluation in several studies. But as QOL data becomes increasingly common in the literature, how will it be defined and measured across studies? This is a concern raised by several authors in this issue and one of the most critical barriers to collecting high-quality data. While we have good standards for some QOL metrics, such as seizure control, pain and cognitive function, the more complex consequences of brain tumors, such as depression, infertility, financial strain, and relationships with caregivers, are difficult to standardize, especially across cultural divides.
Certainly, the emerging paradigm for supportive neuro-oncology involves a multidisciplinary care team that includes, at a minimum, specialists in social work and neuropsychology. In their discussion of palliative care in this issue, our Australian colleagues make the argument that palliative care should be integrated into the treatment plan at time of diagnosis and be administered alongside anti-tumor therapies. This practice has been gaining ground at several centers in the United States as well, but it requires collaboration from a group of specialists and considerable resources.
In order to give clinicians useful information to incorporate into their routine practice, applied neuro-oncology studies must also stratify by tumor type, grade, progression status, and by what stage a patient has reached in the course of their illness. Further refinement may be possible by gathering data on the types of morbidities associated with specific tumor locations, and one study of this kind is presented here. This type of delineation will give us a better picture of the specific morbidity profile for a given tumor and may enable us to better prepare patients and caregivers for the future.
It is also essential to arm patients with information related to common co-morbidities such as seizures, risk for thromboembolic disease, and fatigue and sleep disorders. This requires health care professionals working with brain tumor patients to have a thorough understanding of the entire disease process and to be aware of current progress being made to mitigate tumor- and treatment-related effects, such as new antiepileptic drugs with better side effect profiles. The potential consequences of treatment with radiation and chemotherapy must also be examined through the lens of optimizing QOL, and it is critical that patients are appropriately counseled about how these therapies can affect their daily lives. Fortunately, we are becoming better at using genetic information and molecular markers found in different tumor types to predict which patients will respond best to certain kinds of adjuvant therapies, and some of those advances are reported by authors in this issue.
While improving survival remains the main objective in neuro-oncology, today we have more tools than ever to help our patients cope with the day-to-day realities of this illness. Many of them are discussed in this issue, which we hope will encourage discussion and further collaboration among societies to develop high-quality applied neuro-oncology research. It is possible for patients to enjoy rich lives following a diagnosis of a brain tumor. The vibrant paintings that appear on the cover of this issue and throughout its pages were created by Kris Hardin, an extraordinary anthropologist who was diagnosed with glioblastoma in 2007 and passed away in 2012. She returned to painting after her diagnosis and found that she was more confident in her strokes and less afraid of color.
It is my hope that while striving to advance treatments for all types of brain tumors, we can also focus on the place where we are and give our patients care that preserves their well-being and dignity at every stage of their illness.“Painting and drawing has always helped me focus more intently on the place where I am. I then see things more clearly.”Kris Hardin