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3 The Airborne Hazards and Open BurnPit Questionnaire and Registry
Pages 43-72

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From page 43...
... This chapter focuses on the development and implementation of the Airborne Hazards and Open Burn Pit (AH&OBP) Registry and its key element, the self-assessment questionnaire.
From page 44...
... The registry website states that the data collected will be used to help monitor health conditions affecting eligible veterans and service members, to help veterans and service members who report deployment-related exposure concerns, and to improve VA programs. It then states the following benefits of participation: creating a point to identify changes in health over time, using the completed questionnaire to discuss concerns with a health care provider, and learning about follow-up care and VA benefits (VA, 2016a)
From page 45...
... That working group was responsible for developing and implementing clinical evaluation guidance for primary care and other providers to support the interagency Airborne Hazards Action Plan, under which the AH&OBP Registry falls. That working group was also tasked with recommending methods to disseminate educational materials based on the guidance it developed and to develop recommendations to improve collaboration among specialists with the goal of improving the consistency of specialist evaluations and interagency situational awareness for unusual cases or clusters of cases (VA, 2012)
From page 46...
... . VA indicated that the agency has also implemented better integration of the AH&OBP Registry database with the health care and enrollment data available in the VHA Corporate Data Warehouse.
From page 47...
... No changes were made to the content of the questionnaire, but several system updates were implemented. The updates included migrating the database platform from the original MongoDB to SQL software, enhancing the VHA staff portal to make VA health care users' registry data more easily accessible to VA providers and facilities and adding capabilities for ad hoc reporting, creating a "data mart"2 in VHA's Corporate Data Warehouse for internal analyses of the raw registry data, and integrating with eBenefits3 to allow access to the registry from the eBenefits website (Lezama, 2016)
From page 48...
... . The Millennium Cohort Study questionnaire collects information on mental, physical, behavioral, and functional health and incorporates several standardized instruments, such as the 36-Item Short Form Health Survey, Patient Health Questionnaire, Posttraumatic Stress Disorder Checklist–Civilian Version, and the so-called CAGE questions for alcohol problems (NIAAA, 2016; RAND, 2016; VA, 2016b)
From page 49...
... When requesting an appointment, service members are instructed to indicate that the appointment is for "health concerns related to the Airborne Hazards and Open Burn Pit Registry exposures" (Sharkey et al., 2014)
From page 50...
... The AH&OBP Registry questionnaire data and VHA clinical data can be aggregated within the VHA Corporate Data Warehouse for use by registry staff or VA researchers (Montopoli, 2016a)
From page 51...
... Pilot testing for the registry questionnaire took place for a little less than 2 months, from April 25 to June 18, 2014, at three VA sites: Detroit, Indianapolis, and New Jersey (Ciminera, 2015b)
From page 52...
... An analysis of deployment segments of registry participants found that 20% of all deployment segments provided by DoD were not verified by respondents as correct. When deployment segments were stratified by date (before September 11, 2001, versus September 11, 2001, and after)
From page 53...
... Since the deployment verification section was not included in the time to completion analyses, the times are underestimated and likely proportionate with the number of deployment segments that an individual needs to verify or manually input. COMMUNICATIONS AND OUTREACH In the June 25, 2014, Federal Register notice, VA stated that it, in coordination with DoD, would conduct extensive outreach to veterans and service members to raise awareness about the registry and to inform eligible individuals of the advantages of participation (Federal Register, 2014)
From page 54...
... A message was sent through the GovDelivery listserv to the Public Health's Military Exposures subscriber list of 45,658 recipients, and 17.9% opened the message. VA reported that the webpage for the Post-9/11 Vet Newsletter had received 6,230 views and that the burn pits registry article had received more than 2,500 page views (Lezama, 2016)
From page 55...
... If a purpose of the registry is hypothesis generation related to exposures to airborne hazards and health concerns, there would be benefit in a targeted outreach to those persons who are likely to have been among the most highly exposed. These persons may be identified through additional linkages with DoD records of deployment locations, number of deployments, length of deployments, and, potentially, military occupation specialty.
From page 56...
... For example, the Tobacco Exposures section of the questionnaire consists of 10 questions, but persons who report that they have not smoked more than 100 cigarettes in the first question skip the next four questions, because those questions are not applicable to them. On the other hand, respondents are instructed to answer the same nine questions on location-specific deployment exposures for each eligible deployment segment, with some respondents having multiple eligible deployment segments.
From page 57...
... General military occupational exposures 1.4. Environmental exposures, regional air pollution 2 Symptoms and Medical History 2.1.
From page 58...
... Certain formatting strategies, such as skip patterns, are typically used in survey design to reduce respondent burden and confusion and, in turn, increase the quality of responses. The AH&OBP Registry questionnaire uses complex skip patterns (for example, in the Tobacco Exposure section [2.5]
From page 59...
... The time required to complete the AH&OBP Registry questionnaire is critically dependent on the number of deployment segments an individual has and when those deployments occurred -- which is the first item that respondents are asked about. As shown in Table 4-3, about 37% of registry respondents made available to the committee had five or more deployment segments, and approximately 11% had 10 or more.
From page 60...
... It is unclear to the committee why sewage pond exposure (which had an item response of "don't know" that was more than 38%) was thought to be important enough to be asked for every eligible deployment, but exposures to dust and airborne hazards (the other half of the registry's title)
From page 61...
... For example, the primary reason that a person might have difficulty jogging a mile may be different from the reason the person has difficulty climbing a flight of stairs. None of the questions on functional limitations, symptoms, or health conditions ask about onset or severity following individual deployment segments.
From page 62...
... Additionally, because many of the respondents have had multiple deployment segments, specifying before, during, or after deployment does not clarify the temporality of condition onset (whether it might have occurred after one deployment but before the next, for example)
From page 63...
... is inconsistent with the focus of two previous questions in this section (3.C and 3.H) which specify "during deployment." There remains much scientific uncertainty about the conditions and diseases that may result from deployed service members' exposure to airborne hazards in Iraq and Afghanistan and some studies have shown that other organs and organ systems are also affected (IOM, 2011)
From page 64...
... . It is not clear that many people can answer these questions accurately or what the purpose of collecting this information would be as these are not health conditions that would be related to burn pit or other airborne hazards exposures.
From page 65...
... This purpose is not served by the poorly worded, nonspecific questions aimed at nondeployment-related factors. Such information might have utility in the context of an epidemiological analysis but, as discussed elsewhere, the registry data are inappropriate to use for that purpose.
From page 66...
... VA medical records and other administrative data, such as vital status, can be linked to the registry data to provide additional information that might be used to identify health status or mortality or support registry operations (Montopoli, 2016a)
From page 67...
... Answering these questions and implementing linkages across multiple data sources is critical for ensuring maximum utility of the registry. SYNOPSIS AND CONCLUSIONS Based on the information presented in this chapter, the committee has reached the following findings, conclusions, and recommendations related to the actions taken by VA to a design and implement a registry for the purpose of collecting health outcomes related to potential exposure to burn pits and other airborne hazards.
From page 68...
... The committee recommends that once VA clarifies the intent and purpose of the registry, it develop a specific plan for more seamlessly integrating relevant VA and DoD data sources with the registry's data, with the goals of reducing future participant burden, increasing data quality by restructuring questions to minimize recall and other biases, and improving the usefulness of the registry database as an information source for health care professionals and researchers. Although a Web-based questionnaire may confer several benefits over more traditional methods, not all eligible persons have access to a computer or the Internet.
From page 69...
... 2015a. Charge to the Committee on the Assessment of the Department of Veterans Affairs Airborne Hazards and Open Burn Pit Registry.
From page 70...
... 2014. Department of Defense participation in the Department of Veterans Affairs Airborne Hazards and Open Burn Pit Registry: Process, guidance to providers, and communication.
From page 71...
... Cynthia Harvey-Pryor at the Veterans Health Administration regarding preliminary comments to the OMB application for the AH&OBP self-assessment questionnaire. Provided to the Committee on the Assessment of the Department of Veterans Affairs Airborne Hazards and Open Burn Pit Registry.


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