Mesothelioma patients, as well as their caregivers, are under a huge amount of anxiety and stress, and many report that they receive little support to help them deal with the psychological impact of living with the disease, according to a review of studies published in the European Journal of Cancer Care.
Even with the most sophisticated treatments available, mesothelioma survival rates have improved little over the years. Patients often face a poor prognosis; many live for little more than a year after being diagnosed. Patients are left to grapple with the emotional impact of their prognosis, as well as with symptoms that can be severe enough to interfere with every aspect of their lives. Because this cancer is so rare, the psychological toll of mesothelioma on both patients and caregivers hasn’t been well studied, and doctors often don’t know how to address their patients’ emotional needs.
“It is important for clinicians to understand the social, emotional, and physical impact of the disease if they are to fully meet patient and family member needs,” explains Sally Moore, Nursing Research Fellow with Royal Marsden Hospital in Sutton, England. “Most clinicians see very few patients with mesothelioma and teams have tended to ‘lump’ or group patients with mesothelioma in with their population of patients with lung cancer.”
Doctors may assume the experience is the same for both diseases. In reality, mesothelioma patients may need very different care than lung cancer patients, in part because mesothelioma is more difficult to diagnose than lung cancer, and there is far greater uncertainty surrounding its prognosis and treatment, Moore says.
To find out what is already known about the experience of living with mesothelioma, and to identify what still needs to be learned, Moore and her colleagues did a search of the currently available research. They found just 13 relevant studies that discussed patient quality of life and symptoms.
Even though few of these studies were focused specifically on the experience of living with mesothelioma, they did highlight the impact mesothelioma can have on patients, both physically and emotionally. Most patients reported experiencing significant symptoms, particularly pain, breathlessness, cough, appetite loss, fatigue, and difficulty sleeping. These symptoms often were not being treated effectively, and were having a significant affect on patients’ social interactions and ability to function on a day-to-day basis.
As significant as these physical symptoms were, the emotional effects of mesothelioma were even more profound. Patients reported feeling anxious, depressed, afraid, and isolated. Their caregivers faced an even higher emotional toll from the disease. Many caregivers indicated that they were not receiving the support they needed from health care professionals.
This study highlights the necessity for more research on the physical and emotional needs of mesothelioma patients, so that health care providers can develop new strategies to meet those needs, Moore says. It’s also important for health care providers to recognize the emotional and physical toll of caring for a patient with mesothelioma, she says. “We need better assessment of caregivers’ needs and strategies to ensure better preparation, education, and support of caregivers in their care-giving role.”
The authors also say it’s crucial to treat mesothelioma is its own unique experience, rather than continuing to lump it together with lung cancer. “If we do, the true experience of mesothelioma will remain hidden and, consequently, we risk failing to commission appropriate services to meet the specific needs of this already neglected population,” they write.
Moore S, Darlison L, Tod AM. Living with mesothelioma. A literature review. European Journal of Cancer Care. 2009 Oct 14 [Epub ahead of print].