OS04.9.A GLIOBLASTOMA PATIENT AND CAREGIVER PERSPECTIVES ON TAKING PART IN A TREATMENT TRIAL: RECOMMENDATIONS TO OPTIMISE TRIAL PROCESSES

Abstract BACKGROUND Quality of life (QoL) is a priority for many cancer patients, particularly when cure is not possible. We conducted a secondary analysis of qualitative data from a randomised controlled trial (RCT) of re-irradiation versus lomustine chemotherapy in patients with recurrent glioblastoma, aiming to offer recommendations to improve experiences of patients and caregivers participating in future treatment trials. MATERIAL AND METHODS The primary endpoint of the RCT is overall survival, QoL being a key secondary endpoint, assessed through surveys and interviews. Secondary analysis of qualitative interviews focused specifically on patient and caregiver experiences of trial participation. Interviews were thematically analysed. RESULTS N=10 patients and N=7 caregivers were interviewed January 2022-December 2023. Participants generally valued the additional hope offered by the trial and felt confident in their expectation of ‘5 star’ care, however, they could face unexpected difficulties at home. We developed four themes: 1) Crisis management: Patients commonly felt unwell whilst on treatment, but uncertainty about the cause (i.e. whether due to cancer, treatment effects, or something else) was occasionally compounded by difficulty accessing general practitioners, thereby intensifying distress and a sense of crisis. 2) De facto care-coordinator role: Spouses, siblings and adult children, often unprepared for care-coordinator roles, had to navigate complex health and social systems to access essential support outside of trial offerings. 3) Trial arrangements: Some patients faced significant practical obstacles to attend for treatment, but there was little negotiation around appointment times. Unhelpful trial communications, e.g. simple administration errors, could trigger a train of worrying thoughts. 4) Unmet support needs: Caregivers tended to take responsibility for practical matters, and they reported unmet social and financial support needs. Key community services could be unresponsive, leaving caregivers feeling ‘abandoned’. Participants were not routinely informed about valuable support such as peer groups and cancer cafés. Nevertheless, where participants had a personal trial contact, who helped with communications and system navigation, they identified this as a key source of help. CONCLUSION Situations seen as relatively marginal from a trial organisation perspective can cause patients and caregivers additional burden. Most of the problems encountered, however, are not unique to the clinical trial setting and are also commonplace in routine care. While these are difficult issues to resolve, we tentatively recommend that, as far as possible, trial design could incorporate an holistic consideration of the patient/caregiver journey through the trial, with a view to optimising trial participation experiences.