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ISRN Oncology  2013 

Reliability of Family Proxy Data for Studies of Malignant Mesothelioma: Results from the ATSDR Pilot Surveillance

DOI: 10.1155/2013/325409

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Abstract:

Objective. To evaluate the validity of proxy interviews in obtaining information on persons with rapidly fatal diseases such as malignant mesothelioma (MM). Methods. Persons with MM diagnosed in 2002 through 2005 in New York and New Jersey and 1997–2004 in Wisconsin were eligible for inclusion in the project. Persons with MM and their family member proxy were interviewed using the same questionnaire designed by ATSDR to collect information on potential direct or indirect occupational and environmental exposure to asbestos, genetic, and health related malignancy predisposition, and exposure to tobacco products. Descriptive statistics and the McNemar/Durkalski test were used to analyze 33 matched pairs. Results. The overall study confirmed a generally high ability of proxies to give interviews of comparable quality and completeness when asked dichotomous questions. The reliability of information collected from proxies varied by topic and family relationship. Conclusions. Family proxy interviews, using dichotomous responses, can serve as an acceptable source of information about health and exposure-related risk factors for MM. 1. Introduction Mesothelioma is an uncommon, malignant neoplasm that arises from mesothelial tissue usually in the pleura, less often in the peritoneum, and rarely elsewhere. Prognosis for malignant mesothelioma (MM) is poor, and the tumor has a median latency period of 32 years from the time of exposure to causative agents [1, 2]. Exposure to asbestos is considered the most important cause of MM [3, 4]. In diseases with potential occupationally or environmentally related causes, such as mesothelioma, exposure identification is critical for the development of preventive public health strategies. Once diagnosed, the median length of survival for persons with MM varies from 5.9 to 11 months [5–7]. The ability to interview persons with newly diagnosed MM is limited because of the very short survival period. Proxy interviewing is a commonly used method of obtaining information on persons with rapidly fatal diseases [8, 9]. However, some studies have shown that data received from proxies may be inaccurate or require the review of additional information sources [10–12]. For this investigation, we collected data on the persons potential direct or indirect occupational and environmental exposure to asbestos, genetic, and health related malignancy predisposition, and exposure to tobacco products which does not cause mesothelioma by itself but may complicate the person’s chances of contracting a disease [13]. We collected this information from

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