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American Brain Tumor Association-Funded Study Explores Survivorship Challenges
Date:5/3/2013

Chicago, IL (PRWEB) May 03, 2013

A new study appearing in the May 2013 issue of Oncology Nursing Forum examines the challenges faced by brain tumor patients in the years following treatment for highly malignant tumors. The study, entitled “A New Reality: Long-Term Survivorship with a Malignant Brain Tumor,” is funded in part by the American Brain Tumor Association.

“Initially for brain tumor patients and their families, survival is a goal, not a state of being. However, as advances in brain tumor treatment and care have led to an increase in long-term survival rates, there is increasing interest among patients, caregiver and health care providers alike in a better understanding of the realities of brain tumor survivorship,” said Mary Lovely, RN, PhD., senior advisor for national programs and services for the ABTA and primary investigator on the study.

The resulting study, which was based on interviews with 35 brain tumor patients and their caregivers from across the United States, found that the type, location and treatment of a brain tumor can contribute to profound changes and challenges in the survivor’s life, including decreased cognition and motor skills, loss of employment, and shifts in interpersonal relationships.

Safety issues were identified as one particularly challenging area affecting both the patient and the caregiver. Respondents cited seizures as a major concern as they are unpredictable, uncontrollable and potentially injurious, noting that “caregivers described the need to be on the constant lookout for unsafe situations for the survivor.” The study further observed that survivors “found themselves relinquishing pleasurable activities because of symptoms,” citing one patient who found his inability to continue with his gardening hobby to be “worse than tumor diagnosis or treatment.”

In order to adjust to these changes, survivors adjust their expectations and build a new real
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