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Update from Mesothelioma Information
In the first of a two part article in our extracts from the Program Report of the International Mesothelioma Program the IMP reviews some of their major areas of research . . .
Molecular Epidemiology of Malignant Mesothelioma
Karl T. Kelsey, MD
Principal Investigator
Mesothelioma is well known to be associated with exposure to asbestos. Yet even among asbestos-exposed individuals, it remains a very rare disease. There appears to be a subgroup of patients who get the disease after relatively little exposure, suggesting that they may be particularly susceptible. In addition, clusters of mesothelioma have been described among families who all were exposed in situations of widespread environmental contamination. These observations suggest that there is a genetic component to susceptibility to this disease.
Leaders of this project have begun to enroll and describe the demographic and occupational characteristics of all patients presenting to the IMP. The team also is recruiting comparable controls and comparing the constitutional genetics of each group, seeking to find genes associated with susceptibility to asbestos-induced mesothelioma. In a related study, project leaders are also characterizing epigenetic changes in the tumors surgically removed from the patients, with the aim of understanding the role of asbestos exposure in inducing these tumor-specific alterations.
New Study Focuses on Quality of Life Issues
Mesothelioma is often a devastating disease, right from the start. From diagnosis through treatment – with its complications and side effects – the disease takes a heavy toll on patients and their loved ones. The burden of this disease has an equally devastating impact on quality of life.
An International Mesothelioma Program study just getting under way seeks to determine the impact of different treatment regimens (multimodality treatment, chemotherapy alone, other treatment, and supportive care) on patients' quality of life. A second objective is to investigate whether palliative care improves patients' symptom management and quality of life compared to those who don't receive it. The study is expected to enroll 400 patients from Brigham and Women's Hospital and the Dana-Farber Cancer Institute over a four-year period.
Once enrolled, patients will receive a mailed questionnaire every two weeks for eight months (or longer, if patients wish to remain in the study). The questionnaire covers areas such as ongoing symptoms, worries, social supports, pain, socioeconomic impact, post-traumatic stress disorder, and other quality-of-life measures.
A key output of the study will be a prospective database containing longitudinal profiles of pain and quality-of-life parameters. Through this database, researchers hope to obtain "normative information by which to interpret the clinical significance of the quality-of-life scores," said Alice Kornblith, PhD, principal investigator for the study and senior research scientist at Dana-Farber Cancer Institute.
The main study has a number of offshoots, all seeking to measure aspects of quality of life.
A subset of participants (those involved in multimodality treatment) may participate in a feasibility study on caregiver quality of life. Previous studies have shown that the physical and psychological status of a patient is related to the level of his or her partner's distress, which increases as the patient's condition worsens. This study's objective is to examine "whether we can adequately assess caregivers' quality of life and its importance in patients' ability to adjust to their disease," said Kornblith.
Another sub-study will involve mesothelioma survivors – those who have completed treatment and are disease-free after one year. Little is known about this group of patients, as the disease is largely fatal. "There may be a group of patients, however," said Kornblith, "who have survived their illness, about whom we have no information as to how they are adjusting to having had mesothelioma. This aspect of the quality of life research program would begin to provide information on this issue."
A third study area will examine the impact of bi-weekly palliative care assessments on mesothelioma patients' symptom management and quality of life. Palliative care addresses physical, psychological, social and spiritual sources of distress for mesothelioma patients and families. "Nurses and others trained in palliative care often help to communicate the patient's prognosis and the need at some point to transition to purely supportive care," said Kornblith. "Because many mesothelioma patients require palliative care services, this study seeks to compare quality of life measures for patients who receive palliative care services with those who do not."
"Ultimately," said Kornblith, "we hope our findings provide the data to enable development of future programs in areas where we discover deficits." For example, if social support is lacking, the program might establish new support groups or facilitate use of the internet to connect patients to other mesothelioma patients. If inadequately treated pain or other symptoms are the most important issues, clinicians can enhance symptom management efforts. "All the data are meant to be used to improve quality of life," she concluded.
Previous update from Mesothelioma Information
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