Facilitators and barriers to early diagnosis of malignant mesothelioma (FILMM): a qualitative study of patient experiences living in England, UK
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Abstract
BACKGROUND Partly due to late presentation and diagnosis of malignant mesothelioma (MM), UK’s survival rate is below the European average [1]. To date, there has been little attention given to patients’ experiences prior to MM diagnosis as available studies have focused on their lived experiences after diagnosis [2], [3]. Therefore, to improve survival through earlier diagnosis, there is an urgent need to understand decision-making points prior to patients’ MM diagnosis.
OBJECTIVES This UK based study aims to explore patients’ experiences from the moment they notice the first symptom until they receive a MM diagnosis. Primary objective • To explore the factors which affect mesothelioma patients’ diagnosis pathway from their first symptom to confirmed diagnosis from their perspective. Secondary objective • To explore patients’ understanding of the development of their symptoms, reasons for seeking medical help and the process of interaction with health care professionals
METHODS This is a qualitative study using one-to-one interviews and was conducted with participants who live in England, UK. Recruitment was via two regional specialist MM outpatient clinics using a purposive sample. A total of 17 patients were recruited, consented and interviewed. The data from the interviews were analysed using framework analysis. We utilised a model of pathway to treatment [4] as a conceptual framework for conducting the interviews and for the analysis of the findings. This model identifies four stages/intervals where delay can occur in the pathway to diagnosis - Appraisal, Help-seeking, Diagnostic, and Pre-treatment intervals and provides a useful framework to describe the participants’ journey to diagnosis and clinical interventions.
RESULTS Preliminary findings indicates that there were barriers and facilitators within each interval identified along the MM patients’ journey to diagnosis. Within the appraisal and diagnostic intervals, the presentation of vague symptoms that were mistaken for a less serious illness were found to be a barrier. Both the patients that presented with these symptoms and their health care professional (HCP) failed to investigate for MM at the onset thereby leading to a delayed diagnosis.
CONCLUSION Our findings identify, from the patients’ perspective, areas for improvement in the interactions and decision points along the clinical pathways to confirmed MM diagnosis. Earlier symptom recognition by both patient and HCP including GPs can be used to target significant and avoidable delays along patients’ MM diagnosis pathway, thereby promoting earlier diagnosis and treatment options.
REFERENCE LIST [1] Cancer Research UK, “Mesothelioma statistics,” Statistics by cancer type, 2018. https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/mesothelioma (accessed Feb. 24, 2020). [2] A. Arber et al., “A research study exploring the patient’s experience during the first three months following a diagnosis of Malignant Pleural Mesothelioma,” Surrey, 2010. [Online]. Available: s.surrey.ac.uk/id/eprint/2517. [3] C. Warnock, K. Lord, B. Taylor, and A. Tod, “Patient experiences of participation in a radical thoracic surgical trial: Findings from the Mesothelioma and Radical Surgery Trial 2 (MARS 2),” Trials, vol. 20, no. 598, 2019, doi: 10.1186/s13063-019-3692-x. [4] F. Walter, A. Webster, S. Scott, and J. Emery, “The Andersen Model of Total Patient Delay: a systematic review of its application in cancer diagnosis,” J Heal. Serv Res Policy, vol. 17, no. 2, pp. 110–118, 2012, doi: 10.1258/jhsrp.2011.010113.