Mesothelioma from the Patient's Perspective
Section snippets
Participants
The interview sample consisted of 13 men and 2 women, mean age 69 years, all of whom knew that they had malignant pleural mesothelioma (Table 1). Participants were recruited by clinical nurse specialists who worked with multidisciplinary lung cancer teams. Patients had to be well enough to participate in an interview, know their diagnosis, and give informed consent. An information leaflet was provided, and full written consent was obtained. Thirteen patients were married; in 12 cases their
Findings
Four main themes arose from the data: coping with symptoms, the burden of medical interventions, finding out about mesothelioma, and psychosocial issues.
Finding out about mesothelioma
Most patients described how they were referred for a chest radiograph at their first or second consultation with a general practitioner. After the chest radiograph indicated that results were abnormal, patients were seen quickly by a hospital consultant—within 2 weeks at the most. Some patients had prior knowledge of workmates or family members with mesothelioma, and this knowledge gave rise to anticipatory anxiety, the so-called “Damocles syndrome” [25]. For most patients this anxiety prompted
Limitations
Recruitment problems in terminally ill patients are well documented [15], [16]. The sample of patients interviewed in this study was recruited by clinical nurse specialists. These practitioners may have acted as gatekeepers and not approached patients who they felt were too ill or distressed for interview, who were in the middle of demanding treatment regimens, or who were inpatients in hospital or hospice. Patients who were experiencing severe symptoms or psychological distress may have
Discussion
A patient who receives a diagnosis of mesothelioma is in a uniquely difficult position because the cause of the illness is known to be exposure to asbestos, the disease is incurable, and it is known to cause breathlessness, pain, and imminent death. Symptoms are similar to those in lung cancer, but intractable pain and recurrent pleural effusions are more common in mesothelioma [5], [19], [28]. Hawley and colleagues [29], who reported an interview study with Australian patients who had
Summary
Patients who have mesothelioma experience a chaotic illness with a high symptom burden and traumatic distressing medical interventions that are palliative rather than curative in virtually all cases. Patients interviewed for this study tended to deal with the illness and its consequences with stoicism and relied heavily on their spouses for support and encouragement in the privacy of their homes. Benefit and compensation processes aggravated the situation and persist for relatives to deal with
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This article was supported by Scientific Foundation Board of the Royal College of General Practitioners grant SFB 2001/07.