The Burden of Treatment: Experiences of Patients Who Have Undergone Radiotherapy and Proton Beam Therapy.

Abstract

Background/Objectives: The physical and psychosocial impacts of cancer treatment can be distressing and profound for many patients, but little is known about the specific impacts of undergoing radiotherapy and proton beam therapy (PBT). This study explores the hidden burdens of treatment and aims to identify the gaps in our current understanding of patients' experience when attending a large radiotherapy and PBT service. Methods: A qualitative study using semi-structured interviews was conducted with patients undergoing treatment. A purposive sample of participants were recruited, reflecting the main indications for radiotherapy and PBT. Semi-structured interviews were conducted between August 2023 and January 2024 either in person, virtually, or by telephone. Data were analysed using Framework Analysis. Results: In total, 20 patients were interviewed. Five themes were identified: informational needs, emotional wellbeing, logistical concerns, physical impacts, and interpersonal impacts. Patients reported additional financial burdens such as transport and staying away from home, difficulty carrying out normal responsibilities, caregiver burden, and increased anxiety. Many patients reported the post-treatment drop in healthcare interaction, which resulted in distress and isolation, difficult. Conclusions: This study indicates that there are many burdens of radiotherapy and PBT outside of the physical symptoms and side-effects of cancer treatment. Tailored support is needed to address treatment-specific concerns within the radiotherapy and PBT service, but this study also suggests that supportive interventions developed for broader cancer populations may be helpful for this patient cohort.