Objectives: To assess the supportive care needs and interest in related services among brain tumour patients and their carers and to compare the level of unmet needs to other cancer populations.
Methods: A cross-sectional survey was posted to 363 households who were subscribed to the Queensland Cancer Fund Brain Tumour Support Service in 2005. Overall, 75 patients and 70 carers (response rate 29.8%) returned completed questionnaires. Measures were the Supportive Care Needs Survey (SCNS-34) and a brain tumour specific subscale for patients and carers, as well as the Hospital Anxiety and Depression Scale (HADS).
Results: Patients most frequently reported requiring support to overcome fatigue, uncertainty about the future and not being able to do the things they used to do. Carers wanted help dealing with fears about the patients mental or physical deterioration, with the impact caring had on their own life, and with reducing stress in the patient's life. Among patients, 30% reported anxious mood and 17% depressed mood on the HADS, while corresponding numbers for carers were 40% and 10%, respectively. Patients and/or carers with higher than average supportive care needs expressed greater interest in support services, such as those to improve physical activity, using community services more effectively and to manage stress. Greater emotional distress predicted higher supportive care needs (e.g. odds ratio depressed patients=2.11; (95% confidence interval 1.10-4.03), while no association was detected between patients' or carers' demographic characteristics, or patients' self-reported medical status and higher than average supportive care needs.
Conclusion: The level of unmet supportive care needs observed among patients with a brain tumour and their carers is similar to that observed among cancer populations with metastatic disease.
Practice implications: Interventions for this group should integrate lifestyle, coping support, and neuropsychological rehabilitation.