Understanding mesothelioma
A newly released report has shone fresh light on how mesothelioma patients are treated in the healthcare system, and the difficulties that they face.
The report, entitled Uncovering Mesothelioma, was put together by the pharmaceutical firm Bristol Myers Squibb, in association with Mesothelioma UK, the national charity supporting those affected by this strongly asbestos-related cancer of the lung lining.
A key conclusion set out by the publication, informed by research involving interviews with five people who had been diagnosed with mesothelioma, was that further work needed to be done to improve the treatment and care that such patients received.
A close look at the diagnosis and treatment journey for mesothelioma patients
The development of the report was largely made possible by the findings from six 60-minute interviews. Four of these interviews were with patients living with pleural mesothelioma, while one interview was with a carer on their own, and one interview was with a patient and their carer together.
The patients surveyed were diagnosed with mesothelioma on dates ranging from 2009 to 2021, and five of the six participants were male.
Much emphasis is placed by the report on the journey undergone by those suffering from mesothelioma, beginning with the first symptoms and continuing through to their experiences of healthcare providers.
The report broke down this journey into four broad stages, and put forward recommendations for the possible improvement of patients’ and carers’ experiences:
1. The onset of symptoms
One of the principal issues around the handling of this rare but aggressive cancer, is that there is a lack of knowledge about mesothelioma among the wider public. Indeed, many are also unaware of the strong connection between this disease and previous contact with asbestos, which can occur many years or even decades before symptoms begin to show.
As a consequence of this lack of knowledge, some sufferers initially ignore their symptoms, perhaps not even suspecting that mesothelioma could be the underlying cause. This, in turn, means that they might already be seriously ill by the time they reach out to medical professionals.
In light of this, the report proposes that a public information campaign be launched, to raise awareness of mesothelioma and the link to asbestos exposure.
2. Presentation in primary care
While it seems clear that lack of public knowledge of mesothelioma is a major problem, another potential reason for the condition not always being initially suspected even by its sufferers, could be the similarity of the symptoms to those of various other illnesses.
With the classic symptoms of mesothelioma including shortness of breath, chest pain, and coughing, the report highlighted the importance of primary care professionals being educated on the possibility of mesothelioma – and past asbestos exposure – as a cause.
The publication urged the rollout of a “robust occupational history tool… in primary care to ensure that asbestos exposure is always enquired about in any patient suffering from respiratory symptoms.”
The report continues: “Where asbestos exposure is identified, this should be flagged and lead to high index of suspicion of mesothelioma and appropriate referral for additional diagnostic tests”.
3. Confirming a diagnosis
Dealing with the diagnosis of mesothelioma is undoubtedly extremely emotionally challenging for many people. Sure enough, the report acknowledges this in its recommendation that at the diagnostic stage, communication with patients and carers should be clear and simple. This can help ensure that at all times, the parties involved understand what is going on.
The report says that every patient should be provided with enough information about the diagnosis process itself, as well as what is known about their condition, at a time when they would like to receive it.
Further emphasised in the publication is the importance of all patients suspected or confirmed to have mesothelioma being able to access a named clinical nurse specialist (CNS) – ideally one dedicated to this specific cancer.
The report adds that there is a need for the CNS workforce to benefit from sufficient investment to ensure their caseloads are manageable, so that they are able to respond appropriately to the patients they care for.
4. Treatment planning
Although the exact situation can naturally differ from one patient to the next, mesothelioma is unfortunately associated with a generally poor prognosis; only about 45% of patients survive for a year or more following diagnosis.
Sadly, the research uncovered various issues with the planning of treatment, including patients and carers frequently feeling that they have to personally push for the consideration of alternative treatment options. This is a shame, given that treatment opportunities and clinical trials do exist that could be of relevance to some mesothelioma sufferers.
Bearing these issues in mind, the report said it was crucial for healthcare practitioners to keep abreast of the latest clinical research, and to make sure they are aware of the ongoing clinical trials for which their patients could be eligible.
The publication said it was essential for patients to be given the option of referral to clinical trials, in circumstances where this would present them with a possibility for treatment. It also called for the development and publication of national standards for the diagnosis, treatment, and care of patients with mesothelioma, to help minimise variation in service provision around different areas of the UK.
A reminder of the importance of us all being more aware of asbestos risks and related health conditions
The full report – which is available to download from the Mesothelioma UK website – unquestionably makes heartrending reading. It underlines just how crucial it is for our healthcare providers and wider societies to think about how we can better optimise arrangements for treating mesothelioma, while also providing other effective forms of support for patients and their loved ones.
The fact is, even today – more than two decades after the final banning of asbestos in the UK in 1999 – there remains inadequate awareness of the devastating impact that asbestos-related disease can have on people’s lives. Connected to this, it is vital that we take every possible step to minimise the risk asbestos continues to pose to those who may conceivably come into contact with it.
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