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Radiotherapy is a crucial treatment for patients with glioblastoma, but results in acute toxicities which can hamper their quality of life. Ensuring patients are provided with the most up-to-date evidence related to their individual trajectory is crucial to positive patient engagement and understanding. Patient-reported outcomes and in-depth information about their lived experience of treatment for glioblastoma are critical to inform high quality information materials. The aim of this project was to collect prospective, real-time data to determine if the chemo-radiotherapy pre-treatment information materials we provide to our patients need to be updated.

A prospective, service evaluation of patients with glioblastoma, eligible for the Stupp protocol, was conducted. A repeat cross-sectional, qualitative design was followed whereby individuals were interviewed at specific time points in the treatment pathway. These were defined as prior to radiotherapy (following planning scan and mould room); during radiotherapy (week 2) and post radiotherapy (4-6 weeks post radiotherapy). Patients and their caregivers were invited to participate in face-to-face, semi-structured interviews. Interviews were recorded, transcribed verbatim and thematically analysed.

In total, nineteen patients with a confirmed diagnosis of glioblastoma and twelve caregivers consented for interview (n=9/n=5 prior to RT, n=5/n=4 during RT, n=5/n=3 post RT). Three main themes emerged. (1) Enhancing public awareness. Responses indicated that headway could be made in educating patients more efficiently in terms of what chemo-radiotherapy related toxicities to expect. (2) Individual patient expectation. The majority of patients raised concern regarding insufficient detail of chemo-radiotherapy related toxicities, with some patients expressing fear of the unexpected. (3) Impact of cancer treatment on daily life. Generally, patients and caregivers indicated that information booklets should provide clearer information on the impact of toxicities on patients’ and caregivers’ daily lives, at differing stages of treatment.

Patients and their caregivers provided constructive responses in relation to wanting more enhanced detail surrounding expected toxicities, toxicity severity and impact on daily life. All participants expressed wanting more detail and information on the probability of likely toxicities to be experienced during and after chemo-radiotherapy, as current pre-treatment information given might be too generalised. Utilising patient and caregiver experiences from qualitative interviews to improve the advice we give and to support treatment toxicities, is critical to managing expectations during chemo-radiotherapy. These results will be used to update patient and caregiver information materials, but further detailed investigation is required.