EVALUATION OF PATIENT REPORTED TOXICITIES AND THE INFORMATION WE PROVIDE TO GLIOBLASTOMA PATIENTS

Abstract

Abstract AIMS To collect prospective, real- time data and lived experiences to determine if the chemo-radiotherapy pre- treatment information materials we provide to our patients need to be updated. METHOD A repeat cross-sectional, qualitative design was followed whereby individuals were interviewed at specific time points. These were defined as prior to radiotherapy (following planning scan and mould room); during radio- therapy (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. RESULTS Eighteen patients with confirmed diagnosis of glioblastoma and eleven caregivers consented for interview (n=9/n=5 prior to RT, n=5/n=4 during RT, n=4/n=2 post RT). Three main themes emerged. (1) Enhancing public awareness. Responses indicated that headway could be made in educating patients more effciently in terms of what chemo-radiotherapy related toxicities to expect. (2) Individual patient expectation. The majority of patients raised concern regarding insuffcient 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. CONCLUSIONS 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 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.