Quality of life and supportive care needs of long term glioma survivors and their family caregivers: Study protocol

Langbecker, Danette H., Ugalde, Anna, Ashley, David, & Livingston, Patricia M. (2015) Quality of life and supportive care needs of long term glioma survivors and their family caregivers: Study protocol. In 20th Annual Scientific Meeting of the Society for Neuro-Oncology, San Antonio, Texas, 19-22 November 2015.

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With improved treatment regimes, an increasing number of glioma patients are becoming long-term cancer survivors. Research has shown a significant number of cancer survivors and their family caregivers experience psychosocial and physical problems, and knowledge of these is essential to develop new interventions or models of care for these groups. This study describes the survivorship care needs and quality of life of long-term glioma survivors or their family caregivers in Australia. A cross-sectional study involving adult glioma survivors (high or low grade glioma, at least 2 years post-diagnosis) and their primary family caregivers across Australia is proposed. We will recruit up to 100 patients and 75 caregivers through study promotion to community and support organisations. Participants will be asked to complete the Functional Assessment of Cancer Therapy (FACT)-Brain, Depression Anxiety Stress Score 21 (DASS-21), Supportive Care Needs Survey (SCNS-34), Self-Administered Comorbidity Questionnaire (SCQ), demographic/medical questions, and open-ended questions regarding the impact of the diagnosis on their activities of daily living, as well as the impact of the disease on their working and social relationships. Caregivers will complete the Supportive Care Needs Survey for Partners and Caregivers (SCNS-P&C45), Caregiver Reaction Assessment, Clinical Care Tasks, DASS-21 and SCQ. Data will be analysed and patient-caregiver dyadic data matched. Existing research suggests long-term glioma survivors are likely to have specific survivorship care needs regarding cognition, neurological deficits, and psychological well-being. This project will provide recommendations for interventions to address the unmet needs of people living with glioma and their caregivers.

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ID Code: 96553
Item Type: Conference Item (Other)
Refereed: Yes
Keywords: brain tumours, quality of life, supportive care needs, caregivers, cancer
DOI: 10.1093/neuonc/nov230.14
Divisions: Current > QUT Faculties and Divisions > Faculty of Health
Current > Institutes > Institute of Health and Biomedical Innovation
Current > Schools > School of Nursing
Copyright Owner: Copyright 2015 [Please consult the author]
Deposited On: 07 Jul 2016 01:13
Last Modified: 07 Jul 2016 05:32

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