Some Psychosocial needs of patients of malignant Mesothelioma
Information and communication needs
Patients diagnosed with malignant mesothelioma and their carers require clear
communication and tailored, accurate information from health professionals about
diagnosis, prognosis, treatment options and end of life issues. There is a modest amount
of evidence to suggest that adequate information is lacking in some domains.
In a UK survey of 83 patients by the British Lung Foundation, over 80% of patients
reported receiving information about treatment options, welfare benefits and
compensation; a lower proportion of patients received information about where to go for
further advice, including out of hours support (62%) and how to control symptoms (53%).
Even fewer received information about end of life issues and palliative care (25%) (301).
In a qualitative Australian study of 13 people including two patients and six carers (302),
results indicated that it was difficult to obtain reliable and accurate information relating
to the disease. When information was not provided by their health professionals, internet
searches resulted in negative or pessimistic information. Respondents also reported that
patients were referred to palliative care too late into their cancer experience (302).
It is important that patients and carers are given the right information at the right time. In
a small qualitative study of five patients with malignant mesothelioma, patients reported
not being provided with the right information and support at the right time. They were
unable to take in information due to the shock of the diagnosis and the overwhelming
amounts of information being provided (303). These findings were echoed in a UK
study of 15 patients, who recalled receiving a ‘hopeless message’ of incurable disease
with no effective treatments sympathetically delivered by doctors. Issues relating to
communication causing distress were reported to continue over the illness trajectory
Information and communication needs
Patients diagnosed with malignant mesothelioma and their carers require clear
communication and tailored, accurate information from health professionals about
diagnosis, prognosis, treatment options and end of life issues. There is a modest amount
of evidence to suggest that adequate information is lacking in some domains.
In a UK survey of 83 patients by the British Lung Foundation, over 80% of patients
reported receiving information about treatment options, welfare benefits and
compensation; a lower proportion of patients received information about where to go for
further advice, including out of hours support (62%) and how to control symptoms (53%).
Even fewer received information about end of life issues and palliative care (25%) (301).
In a qualitative Australian study of 13 people including two patients and six carers (302),
results indicated that it was difficult to obtain reliable and accurate information relating
to the disease. When information was not provided by their health professionals, internet
searches resulted in negative or pessimistic information. Respondents also reported that
patients were referred to palliative care too late into their cancer experience (302).
It is important that patients and carers are given the right information at the right time. In
a small qualitative study of five patients with malignant mesothelioma, patients reported
not being provided with the right information and support at the right time. They were
unable to take in information due to the shock of the diagnosis and the overwhelming
amounts of information being provided (303). These findings were echoed in a UK
study of 15 patients, who recalled receiving a ‘hopeless message’ of incurable disease
with no effective treatments sympathetically delivered by doctors. Issues relating to
communication causing distress were reported to continue over the illness trajectory
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