Neurological, cognitive and safety concerns among issues identified in new study.
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 reality of their life. Survivors shared their efforts to re-define normal, both by developing coping mechanisms for dealing with the changes in their lives, including a renewed emphasis on faith and spirituality, and by identifying new avenues for remaining engaged and active in their communities, including support groups and church activities.
The ABTA recognizes the need to better understand the impact of this disease on survivors and their families and continues to explore research opportunities on survivorship and long-term effects of treating brain tumors.
“Funding research into the biologic and psycho-social characteristics of long-term survivors is imperative, and is an area we are collaboratively pursuing,” says ABTA Chief Mission Officer Deneen Hesser, MSHSA, RN, OCN. “Providing personalized information and support throughout the patient-to-survivor transition and thereafter is the essence of the American Brain Tumor Association’s mission.”
Information on the ABTA’s support services for patients and families is available at http://www.abta.org or 800-886-ABTA (2282).
About the American Brain Tumor Association
Founded in 1973, the American Brain Tumor Association was the first and is now the only national nonprofit brain tumor organization providing both support services to brain tumor patients and their families, and funding brain tumor research. For more information, visit http://www.abta.org or call 800-886-ABTA (2282).