Malignant Mesothelioma (MM) is a disease which is usually caused by exposure to asbestos, a group of minerals made of tiny fibres, which was widely used in construction. These tiny fibres can easily get in the lungs, thereby damaging the lungs over time.  As MM is often diagnosed at an advanced stage, treatment is usually focused on controlling the symptoms and prolonging life for as long as possible. Survival of patients in the UK lags behind that of comparable European countries.¹ Understanding patients’ experiences such as recognising early symptoms, help-seeking decisions, diagnosis, and access to specialist services prior to diagnosis are vital to improving early diagnosis as the chances of survival within England drops from 60% in the earlier stages of the disease to only 30% when diagnosed late.^2-4  Presently, there has been little attention given to patients’ experiences before MM diagnosis. The FILMM study is about understanding the journey of people with Mesothelioma from the moment they notice their first symptom until they receive a diagnosis. This study will enable us to understand the decisions patients and health care staff make along the way to patient diagnosis and to look for areas where we can improve that and reduce significant delays in diagnosis. This is a qualitative study that involved mesothelioma patients taking part in an in-depth patient interview. The interview was audio recorded and took place by either phone, online, or face-to-face, according to the participant choice (and COVID restrictions allowed).

METHODS

This study involved 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 ⁵ 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. Health literacy regarding MM appears to have an impact on how soon a patient sort help regarding their symptoms as well as how quickly they were placed on a MM diagnostic pathway by the HCP as a result of the HCP’s knowledge regarding MM.

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.

Contact for Further Information

For any further information please contact the lead researcher, Dr Osaretin Oviasu at osaretin.oviasu@dmu.ac.uk Or by mail on: 2.28 Edith Murphy House, The Leicester School of Nursing and Midwifery, Faculty of Health and Life Sciences, The Gateway, De Montfort University (DMU), Leicester, LE1 9BH.

Reference List

1. Cancer Research UK. Mesothelioma statistics. Statistics by cancer type. Published 2018. Accessed February 24, 2020. https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/mesothelioma
2. Bibby AC, Tsim S, Kanellakis N, et al. Malignant pleural mesothelioma: An update on investigation, diagnosis and treatment. Eur Respir Rev. 2016;25(142):472-486. doi:10.1183/16000617.0063-2016
3. Odisio EG, Marom EM, Shroff GS, et al. Malignant Pleural Mesothelioma: Diagnosis, Staging, Pitfalls and Follow-up. Semin Ultrasound, CT MRI. 2017;38(6):559-570. doi:10.1053/j.sult.2017.07.006
4. Kirschner M. PL04.04 Prognostic Factors in Malignant Pleural Mesothelioma. J Thorac Oncol. 2019;14(10):S12. doi:10.1016/j.jtho.2019.08.068
5. Walter F, Webster A, Scott S, Emery J. The Andersen Model of Total Patient Delay: a systematic review of its application in cancer diagnosis. J Heal Serv Res Policy. 2012;17(2):110-118. doi:10.1258/jhsrp.2011.010113