Laying the Foundation for a Mesothelioma Patient Registry: Development of Data Collection Tools

Our plain-English summary of Laying the Foundation for a Mesothelioma Patient Registry: Development of Data Collection Tools, by J.M. Gaitens, M. Culligan, J.S. Friedberg, et al (International Journal of Environmental Research and Public Health, 2023).

The study

• Authors: J.M. Gaitens, M. Culligan, J.S. Friedberg, E. Glass, M. Reback, K.A. Scilla, A. Sachdeva, A. Atalla, M.A. McDiarmid
• Journal: International Journal of Environmental Research and Public Health
• Published: 2023;20(6)
• Cited by: 2 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Mesothelioma, a cancer of mesothelial cells that line the chest, lungs, heart, and abdomen, is a relatively rare disease. In the United States, approximately 3000 individuals are diagnosed with mesothelioma annually. The primary risk factor for mesothelioma is occupational asbestos exposure which can occur decades prior to disease development, though in approximately 20% of cases, known asbestos exposure is lacking. While several other countries have developed mesothelioma registries to collect key clinical and exposure data elements to allow better estimation of incidence, prevalence, and risk factors associated with disease development, no national mesothelioma registry exists in the U.S. Therefore, as part of a larger feasibility study, a patient exposure questionnaire and a clinical data collection tool were created using a series of key informant interviews. Findings suggest that risk factor and clinical data collection via an on-line questionnaire is feasible, but specific concerns related to confidentiality, in the context of employer responsibility for exposure in the unique U.S. legal environment, and timing of enrollment must be addressed. Lessons learned from piloting these tools will inform the design and implementation of a mesothelioma registry of national scope.

In plain English

This article described a two-year project, part of a larger feasibility study, to develop and pilot test a patient exposure questionnaire and a clinical data collection tool for a possible U.S. national mesothelioma registry. It did not measure disease risk. Eleven patients with pleural mesothelioma (nine men and two women, all white, mean age 63) gave feedback in interviews: three on a paper version of the questionnaire and eight on an online version. All participants said the questionnaire's length was "appropriate." The paper version took up to 20 minutes. The online version took about 45 minutes on average, ranging from 15 minutes to 2 hours. Staff needed five to 20 minutes per patient for the clinical tool. Of 18 patients identified, one declined after speaking with a lawyer about pending litigation, and three lacked home internet. The authors concluded that online collection was feasible. They added that concerns about confidentiality in the U.S. legal environment, the timing of enrollment, and resources must be considered. They noted possible selection bias and that participants were younger than the average U.S. patient.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Development and pilot testing of data collection tools (a patient exposure questionnaire and a clinical data collection tool) using an Advisory Board and structured key informant interviews with patients, carried out as a two-year project within a larger feasibility study for a national mesothelioma registry
• Who was studied: 11 patients with pleural mesothelioma at or linked to a University of Maryland mesothelioma research and treatment center: nine men and two women, all white, mean age 63 plus or minus 6 years. Three reviewed the paper questionnaire and eight reviewed the electronic version. Clinic and research staff also gave feedback on the clinical tool.
• Exposure: No exposure was studied as a risk factor. The questionnaire asked about medical, occupational and residential history, household members' asbestos exposure, hobbies such as home renovation and brake work, smoking, and the patient's own view of what caused their mesothelioma.
• Main results:
  • Of 18 mesothelioma patients identified as potential key informants, two were not asked to take part on their clinicians' advice because they were newly diagnosed and "emotionally devastated". Two others agreed and later declined.
  • One patient with pending litigation related to their mesothelioma declined after speaking with their lawyer.
  • Three individuals reported having no internet access at home, so they could not give feedback on the electronic questionnaire.
  • All participants reported that the questionnaire's length was "appropriate."
  • The paper questionnaire was completed within 20 minutes. The web-based questionnaire took approximately 45 minutes on average, with a range of 15 minutes to 2 hours.
  • All participants completed the survey without skipping questions.
  • Of the 8 participants who reviewed the web-based questionnaire, three reported that their mesothelioma was likely related to work exposures, two to military exposures, and three to other exposures (for example, paternal occupational exposure). These were the patients' own beliefs.
  • Clinic and research staff reported that completing the clinical data collection tool took five to 20 minutes per patient.
  • Because of concern that participant information could be subpoenaed, the project obtained a Certificate of Confidentiality from the U.S. National Institutes of Health.
• The authors' conclusion: The authors concluded that key informant interviews suggest it is feasible to capture exposure and clinical information using online data collection tools. They also concluded that concerns about data confidentiality (given the U.S. legal environment), timing of enrollment, and availability of resources must be considered.
• Limitations the authors state:
  • Potential selection bias: patients who were approached but did not take part might have given different feedback.
  • Key informants were on average younger than the average U.S. mesothelioma patient at diagnosis (63 versus 72 years), which may limit generalizability.

Topics

The National Library of Medicine indexes this study under subjects our site covers: Mesothelioma.

Medical terms in this study, explained in our Lexicon: Mesothelioma, Mesothelial Cells, Asbestos Exposure.

Related studies

• Mesothelioma and employment in massachusetts: analysis of cancer registry data 1988-2003 — C.R. Roelofs, G.J. Kernan, et al. (2013)
• Impact of malignant mesothelioma in Taiwan: a 27-year review of population-based cancer registry data — L.J. Lee, Y.Y. Chang, et al. (2010)
• Differences in cancer survival by sex: a population-based study using cancer registry data — N. Afshar, D.R. English, et al. (2018)
• Factors affecting the mesothelioma detection rate within national and international epidemiological studies: insights from Scottish linked cancer registry-mortality data — D.R. Camidge, D.L. Stockton, et al. (2006)
• Differences in cancer survival by remoteness of residence: an analysis of data from a population-based cancer registry — N. Afshar, D.R. English, et al. (2020)
• Robust data: the essential foundation of a revised staging system for pleural mesothelioma — H.L. Kindler (2012)

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