In our Gulf War Illness (GWI) treatment survey, we were struck by the large number of Veterans who used the “worst treatment” query to cite the adverse provider encounters they had experienced, involving adverse physician attitudes that had shamed, humiliated, disbelieved, or denigrated them, that suggested symptoms were fabricated, in their head, or due to stress, and that discounted, without seeking to learn facts, the possible role of Gulf exposures in Veterans’ health effects. Some asserted that the greatest psychic wounds they had experienced were due to these encounters -- and underscored the sense of betrayal that, having served their nation nobly and suffered lifelong consequences as their “reward,” they should be so treated.

The doctor should create a therapeutic alliance that builds hope, trust, and a partnership in the search for solutions. Physicians abrogate hope and trust, and become a new source of injury when they deny symptoms, dismiss suffering, or imply patients are malingering or symptoms are in their head -- as is common in GWI. Veterans directly made the connection of these physician attitudes to consequences. These attitudes have emotional fallout: they leave Veterans feeling hurt, dishonored, humiliated, and hopeless. They breach trust in the physician, leading some Veterans not to return for needed care. When prejudicial beliefs are shared, interpersonally or in the medical record, they can taint other clinicians’ attitudes -- or in some cases attitudes of sufferers’ family and caregivers. They can affect the content of care, for instance, impeding needed testing and timely or specific treatment. Conversely, Veterans who find a provider they feel believes their symptoms, grasps their suffering, and strives to find effective interventions, express boundless appreciation, and express hope that solutions will be found.

This proposed study seeks to follow-up formally on the comments made by Veterans in the treatment survey. It seeks to examine how perceived attitudes of providers relate to outcomes, considering psychological impact (feeling honored/dishonored, hope vs. futility), the patient’s relationship to the provider and healthcare system (trust, satisfaction, return for care), the impact of physician attitudes on third parties where known (tainting of attitudes of other physicians, or of family/caregivers), and relation to content of care (deferral of tests, nature of treatments offered). To aid in understanding these relationships, Veterans will be asked to share information about their best, worst, and most recent provider encounters -- more than one best or worst, if they choose. The results will be used to forge materials to directly tackle these adverse attitudes.

(1) We will generate an information sheet for patients to bring to providers. This will share key bullets on GWI (with links to more information), addressing evidence that: •Health problems are indeed increased in those deployed to the Gulf. •These are tied to toxic Gulf exposures; in contrast, stress is not an independent predictor. •“Organic” illness is affirmed by alterations in numerous biological markers and objective outcomes. Finally, it will share key findings, produced by this study, on relations of attitudes to outcomes.

(2) We will generate a provider assessment/feedback form, with which Veterans with GWI can be in the driver seat, assessing their providers’ attitudes, offering a tool for feedback directly to the physician, to the healthcare system to include in the provider record, or for collating among Veterans to document problems in the system. (These can and should also be used to reward favorable clinicians.)

(3) Finally, we will produce a mini-MOOC (massively open online course), to educated providers -- available as a link on the information sheet. For this we will work with Dr. Barbara Oakley, herself a Veteran, who has produced among the top viewed of all MOOCS. We will focus on key conceptual issues that won’t quickly date -- like the bulleted issues in product 1 -- with resources for where to find up-to-date treatment information.

This effort seeks to help those with GWI. Benefits may extend to others whom some physicians similarly disdain. Our evidence indicates that this includes nonveterans suffering multisymptom illness following Gulf-relevant exposures, such as pesticides, fluoroquinolone antibiotics, or vaccines; and others with conditions, like fibromyalgia, chronic fatigue, or chemical sensitivity, that are prevalent in GWI (and can arise as a consequence of these exposures). If Veteran reviewers of the MOOC approve, we may reference relevance of findings to these groups, with the goal to expand viewership by physicians, and as a result benefit Veterans with GWI. The first 2 years will be used to develop, receive reviews, modify and disseminate the survey, to receive survey results; and plan and draft the products -- particularly those elements that don’t rely on survey results. In the final year, data will be analyzed and products finalized. Dissemination will begin.