Medically accurate illustration of the brain© SciePro / Getty Images / iStockWhat matters most to patients? A previous study involving brain tumor patients identified that when anti-tumor treatment is understood to be ‘the only option’, the risk and impact of side effects may not be adequately explained to and understood by patients. It was also noted that there is a strong desire for more information to be provided regarding support services.
Such patients have expressed a strong desire to have control over their QoL, with healthcare professionals further highlighting the importance of maintaining the independence of patients and providing emotional support. In light of this, we think that it is important for studies to not only consider which treatments are most effective in treating tumors, but also which treatments provide patients with better overall QoL .
PBT is an advanced type of RT, also given on weekdays over about 6 weeks . It requires expensive technology but can reduce the dose of RT delivered to the normal brain, including parts of the brain used for memory and information processing. This might mean that PBT can reduce long-term side effects in patients with ODG, though we do not know this for certain. We hope to answer this question in the APPROACH trial.
Through our patient engagement, it was identified that patients often consider that standard QoL questionnaires “fail to address some important areas reflecting daily wellbeing and fatigue”. For example, there was a specific observation that standard questionnaires do not address “difficulty getting going in the morning, which causes frustration and impacts significantly on family life, work and mood”.