Facilitators and barriers to early diagnosis of malignant mesothelioma
Research type
Research Study
Full title
Facilitators and barriers to early diagnosis of malignant mesothelioma (FILMM)
IRAS ID
310766
Contact name
Osaretin Oviasu
Contact email
Sponsor organisation
De Montfort University
Duration of Study in the UK
0 years, 6 months, 30 days
Research summary
Summary of Research
Partly due to late presentation and diagnosis of malignant mesothelioma (MM), UK’s survival rate is below the European average. To date, there has been little attention given to patients’ experiences prior to MM diagnosis. 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. Therefore, to improve survival through earlier diagnosis, there is an urgent need to understand decision-making points prior to patients’ MM diagnosis.Using a qualitative approach, this study aims to explore patients’ experiences from the moment they notice the first symptom until they receive a MM diagnosis. Thereby contributing to the awareness of non-specific, subtle and recurrent changes in patient’s symptom/s prior to diagnosis. This involves interviewing MM patients so as to understand people’s individual experiences leading up to MM diagnosis.
The findings from the study will feed into a follow-up study, as the findings from the interviews will help us to adapt an existing cancer questionnaire to ensure that it asks the right questions for people with MM. Permission has been obtained from the author of the Cancer Symptom Interval Measure (C-SIM) validated questionnaire to adapt it for mesothelioma patients, and this will be used to quantify the delay identified along mesothelioma patients’ pathway to diagnosis. Using this newly adapted questionnaire means we can understand the experience of many more people and use the results to start to identify areas in the diagnosis pathway that can be improved so as to promote early diagnosis. This will inform the future development of interventions that could help tackle anything that hinders early diagnosis and improve the pathway to MM diagnosis.
Summary of Results
Background:
Prognosis with plural mesothelioma (PM) is poor, yet evidence indicates a better chance of survival if earlier diagnosis is provided. Partly due to late presentation and diagnosis of plural mesothelioma (PM), the survival rate in the United Kingdom is below the European average. Furthermore, there has been little attention to PM patients’ experiences prior to diagnosis as available studies have focused on their lived experiences after diagnosis.
This study aimed to identify the barriers and facilitators to PM diagnosis and looked to understand the reasons for any variability in patients' experiences of the pathway to diagnosis and proposed treatment plans.Methods:
The theoretical basis for this study was the Model of pathway to treatment, which highlights four intervals (Appraisal; Help-seeking; Diagnostic; and Pre-treatment) on the pathway to diagnosis where a patient can experience ‘delay’ in obtaining a cancer diagnosis.
Patients with confirmed PM diagnosis were invited to take part in an in-depth, semi-structured interview about their pathway to diagnosis. Participants were purposively recruited from two specialist PM outpatient clinics in England. A total of 22 participants were recruited to the study. However, due to poor health (3 participants) or dying before their interview (2 participants), a total of 17 participants took part in the study. The interview data were analysed using framework analysis.Results:
Our findings identified barriers and facilitators within every interval along the PM 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. Health literacy regarding PM 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 PM diagnostic pathway by the healthcare professional (HCP) as a result of the HCP’s knowledge regarding PMConclusion:
Earlier symptom recognition by both patient and HCP including GPs can be used to target significant and avoidable delays along patients’ PM diagnosis pathway, thereby promoting earlier diagnosis and treatment options.REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
22/NW/0081
Date of REC Opinion
20 Apr 2022
REC opinion
Further Information Favourable Opinion