Brain Neoplasms Clinical Trial
Official title:
Health Related Quality of Life in Pediatric Central Nervous System (CNS) Tumors: A Feasibility Study Utilizing PROMIS
In this research study the investigators want to learn more about the quality of life before,
during and after cancer treatment in patients with central nervous system brain tumors. Often
CNS tumors and cancer treatment can cause many physical and emotional problems and side
effects. Some of these problems and treatment side effects can cause a change in a patient's
qualify of life and overall well-being. Quality of life questionnaires are used to measure
well-being and ability to carry out daily activities by asking patients to answer several
questions about their physical, emotional, and social well-being.
In this research study we want to find out if patient's answers to these questions change
over the course of your treatment. We also want to see if doctors and nurses can use these
answers to the questions to help patients feel better and increase their activity during
cancer treatment.
Pediatric CNS tumors are the second most common form of pediatric cancer and the leading cause of death related to pediatric malignancies. Over decades of work and through the efforts of collaborative groups, cure rates have increased significantly. However, various types of CNS malignancy outcomes have remained stagnant. Moreover, side effects from treatments of even the most curable CNS tumors may have dramatic short and long-term sequela ranging from cognitive, endocrine malfunction, functional mobility, neurological, and ophthalmologic compromises. As science and protocol directed therapies continue to find cures for these patients, work also must continue in efforts to explore patient reported outcomes (PROs) and health related quality of life (HRQOL) throughout the trajectory of a patient's disease process. Increased efforts in patient reported outcomes will lead to improvements in symptom management, functional status, and overall quality of life (QOL). ;
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