Experiences of Men with Prostate Cancer Regarding Information Related to Radiotherapy in the UK

Abstract

Approximately 52,000 men are diagnosed with prostate cancer each year in the UK with around 60% (~31,000) diagnosed at an early stage (locally advanced or localised disease). Around a third of men diagnosed with these locally advanced or localised prostate cancers will receive radical radiotherapy. Men will receive information and have discussions with health care professionals (HCPs) before, during and after radiotherapy related to decision making and management options, treatment procedures and the likely long term sequalae of their cancer management. Whilst previous studies have explored information across the course of a patient’s prostate cancer diagnosis, none has previously focused specifically on the information related to radiotherapy for men with prostate cancer. This study aims to explore the experiences of men with early-staged prostate cancer regarding information related to radiotherapy in the UK A qualitative study situated within a social constructivist paradigm was devised, utilising patient and public involvement as an integral component of the early stages of development of the research design. Semi-structured interviews were undertaken with 20 men with prostate cancer who had received radiotherapy and 13 of their wives, to gain their perspectives regarding information exchanged before, during and after radiotherapy. Three focus-group interviews comprising 14 therapeutic radiographers across bands 5-8 recruited from one NHS Trust were carried out in order to provide context to the experiences reported by the men and their wives. Data were analysed using a thematic analysis approach. Three distinct periods arose as being important regarding information related to radiotherapy: the pre-radiotherapy period from point of diagnosis through to just before the radiotherapy planning appointment, the peri-radiotherapy period covering radiotherapy planning and treatment, and the post-radiotherapy period from end of treatment to the time the patient was interviewed (from 3 to 18 months after the end of treatment). Across these three periods, 12 semantic themes were identified. In the pre-radiotherapy period these were a) information and being diagnosed and b) information and decision making. In the Peri-radiotherapy period themes were c) being prepared for planning and treatment, d) information related to external beam radiotherapy procedures, e) retention of and compliance with information, f) information about practicalities, g) peer support and the “waiting room club” and h) therapeutic radiographers and information. In the post-radiotherapy period, the themes were i) the end of radiotherapy – information about what happens next and follow up, j) information on treatment-related outcomes, k) information and decision regret and l) information about sexual dysfunction. In addition, two latent themes of time and communication were identified as arising across all periods and underpinning the semantic themes. To demonstrate the interconnectedness of the themes within the chronology of the three identified periods, two contrasting cases are described to illustrate the impact and place of information in the experiences of two men. The issues related to information reported by the participants had multiple mediating factors that differed across the three periods and so were considered with respect to Bronfenbrenner’s ecological systems theory. As a result, a new model of ecology of information in radiotherapy has been proposed to describe their experiences. Patients’ experiences related to information and communication during their radiotherapy must be contextualised within the whole cancer journey, their personal ecological systems and changing needs over time. Information needs related to decision making during the pre-radiotherapy period can profoundly impact on longer term outcomes, particularly, with respect to sexual functioning. However, this could be mediated by improved opportunities for communication during the pre-radiotherapy period and further opportunities for specialist information and support in the post-radiotherapy period. This study has demonstrated that information before and after, as well as during radiotherapy is a crucial factor in determining the long-term quality of life outcomes for men with prostate cancer.