Many people diagnosed with brain tumours and their families are dissatisfied with the information they are provided. Information is important to people newly diagnosed with a tumour to assist them to make treatment decisions, and also to help them to cope with their illness. However, providing information can be challenging, as patients are often treated by a number of health professionals at multiple treatment centres, and complex medical terms are often used.
Three research projects have been conducted to try to improve information delivery for these patients and their families. Firstly, health professionals involved with patients with brain tumours have participated in research to help understand how information is currently provided, and how improvements can be made. Based on results from this study, research was conducted with patients, their families, and neuro-oncology professionals to develop a list of questions (a question prompt list, or ‘QPL’) that patients can take to medical appointments, to ask of their doctor and help obtain desired information. The third project assessed the feasibility of evaluating the QPL with people recently diagnosed with a brain tumour. This study showed that the QPL was acceptable and useful to patients.
This study also provided information to inform future studies aiming to formally evaluate whether the QPL helps people with brain tumours obtain the information they desire.
Langbecker D, Janda M, Yates P. (2013) Health professionals’ perspectives on information provision for patients with brain tumours and their families. European Journal of Cancer Care. 22(2): 179-87.
Langbecker D, Janda M. (2012) Quality and readability of information materials for people with brain tumours and their families. Journal of Cancer Education. 27(4): 738-43.
Langbecker D, Janda M, Yates P. (2012) Development and piloting of a brain tumour-specific question prompt list.European Journal of Cancer Care. 21(4): 517-26.
Janda M, Steginga S, Dunn J, Langbecker D, Walker D and Eakin EG. (2008) Unmet supportive care needs and interest in services among patients with a brain tumour and their carers. Patient Education and Counseling. 71(2): 251-8.
Janda M, Steginga S, Langbecker D, Dunn J, Walker D and Eakin EG. (2007) Quality of life among patients with a brain tumour and their carers. Journal of Psychosomatic Research. 63 617-623.