A new study aiming to improve the quality of life for people with primary brain cancer and their families is seeking those living with the condition for a survey to identify gaps in the services they need over the longer term.
Led by Dr Danette Langbecker, from QUT's Institute of Health and Biomedical Innovation, the Australian Brain Cancer Survivorship Study will look at the physical, psychosocial and practical problems survivors of glioma, the most common brain cancer, experience.
"Survival rates have improved over the past three decades for some types of primary brain cancer and so an increasing number of patients will become long-term cancer survivors," Dr Langbecker said.
"Research has shown that cancer survivors generally experience psychological problems such as loss of confidence, and physical problems with increased risk of heart disease, osteoporosis, diabetes and fatigue.
"But long-term survivors of brain cancer and their families are likely to experience even more issues such as neurological and cognitive impairment resulting from the tumour or the treatments so they can't work or take part in social events.
"My research has shown that both patients and their family or friend caregivers experience high levels of distress, reduced quality of life and a host of unmet support needs such as needing rehabilitation services, help with household management or financial assistance.
"We know that while it is a rare cancer, 1700 Australians are diagnosed each year with brain cancer and 1200 die from it. This means it touches thousands of people directly and indirectly and we owe it to them to provide the best possible support."
Dr Langbecker is calling for long-term glioma patients (diagnosed two-plus years ago) and their family caregivers to answer a survey online (http://survey.qut.edu.au/f/184646/7c13/) or on paper to help her with this research.
To take part in this study, contact Dr Langbecker on d.langbecker@qut.edu.au or 07 3138 6123 or go to http://survey.qut.edu.au/f/184646/7c13/
