Accidental exposure to NSAIDs is not uncommon for patients with AERD, and in some instances it can lead to life-threatening reactions [4]. Patients diagnosed with AERD who are not desensitized must be educated on the names of the medications they must avoid. They should also be trained on the importance of relating this information to health care providers that may dispense or prescribe medications to them. It is also recommended that patients with AERD wear a medical ID. [1] This is a simple prevention strategy that can avoid accidental exposure to NSAIDs in an emergency situation. In our study, nearly 10% of the respondents had visited an emergency room within 12 months of the survey due to an adverse reaction to an NSAID. This suggests that annually, over 10% of patients with AERD may accidentally ingest an NSAID thereby putting them at risk for a severe medication adverse reaction.

Further, our study results demonstrated that 25% of respondents were aware that the use of medical ID is recommended for AERD patients, while only 19% respondents were using a medical ID at the time of the survey. The majority (81%) of respondents were not using any form of medical identification. Our current findings with this international cohort of AERD patients aligns with previous study results about medical ID use at our local institution, with an AERD population [8]. Despite differences in patient location, the attitudes towards medical ID use and the level of nonuse of medical ID are compellingly similar. The low prevalence of medical ID use could be explained by insufficient patient education by healthcare providers about the advantages of medical ID use for their NSAID sensitivity, representing a deficiency in patient care and a potential area for improvement. In this study, other reasons reported by survey respondents for not using a medical ID were high cost, not wanting others to know about their medical condition, appearance, and discomfort. Such reasons could be addressed and discussed with AERD patients with their health care provider during the education and counselling of the importance of using medical ID for their disease.

There was no association between age, income, geographical location, or education level and the use of medical ID in this study. However, there was an association between wearing medical ID and emergency room visits in the last year due to accidental exposure to NSAIDs. One potential explanation for this observation is the non-adherence phenomenon [10]. That is, the non-users of medical ID may have fewer health concerns and invest less in their in their own health. It is well known that nonadherence is a significant problem in chronic disease management [11] and non-adherence is directly related to elevated health care costs, hospitalizations, and patient mortality [12,13,14]. Despite this possible explanation, it remains a challenge to identify the exact cause for our results without having adequate information regarding the context of the visits to the emergency room or how the survey respondents were exposed to aspirin and NSAIDs.

The participants in this survey reported using many types of medical ID. The most commonly form of ID used was bracelets (60%) followed by smart phone technology (26%); other forms of ID such as a wallet card, wristbands and tattoos were also reported. The wide variety of options for medical ID can make it easier for patients to obtain one, but it can also mean that in an emergency, they are not easily located or accessible by health care providers. In our study, we did not ask for the type of information in the medical ID and therefore there may be limitations on the type and quality of the information provided. A recent study about the use of medical ID to communicate allergy information using of the MedicAlert Foundation database in Australia [15], found that the quality of the information on the ID was variable and non-standardized. The authors suggest that the specific allergen and nature of the reaction be recorded on the ID. Currently, there are no guidelines specifying what information AERD patients should have on a medical ID, therefore, this should be part of the education given to patients by their physicians.

There are clear advantages of using a medical ID for the AERD patient population to avoid or lower the risk of accidental exposure to aspirin and NSAIDs. Medical ID can serve as a reminder to AERD patients of their hypersensitivity when purchasing over counter medications or when getting a new physician prescription. The essential role of medical identification is clearly shown in emergencies when a patient cannot communicate to provide their medical history to health care providers, but they may [15] also expedite emergency treatment once an accidental exposure has occurred by providing information to emergency responders or emergency room personnel about possible cause for the hypersensitivity reaction. In our study, 9% of patients reported a visit to an emergency room due to exposure to aspirin or another NSAID, however the survey did not collect details about the circumstances around the accidental exposure and therefore we cannot determine if the use of medical ID could have prevented the exposure. The real impact of medical ID use by the AERD population remains unclear on their care. The present study demonstrated that AERD patients require more education regarding the importance of using medical ID, which in turn can be sign that health care providers need to be trained themselves on AERD, NSAID avoidance and the need for medical ID use in this population. Additionally, this study can be used as an impetus for more investment into patient safety initiatives and as a guide for additional work to prevent accidental exposure to aspirin and NSAIDs in the AERD patient population. Furthermore, future studies may be needed to evaluate both the real impact of medical ID in preventing accidental exposures or expediting treatment is needed as well as the cost-effectiveness of medical ID use by the AERD patient population.

Our study has some limitations. Although we asked those who answered the survey to confirm that they had been diagnosed with AERD, we could not verify their diagnosis. The Facebook support group has approximately 4500 members. We only obtained 245 complete responses to the survey (response rate of 5.4%). However, we do not know how many members of the group are actual patients with AERD, and how many may be family members or simply other interested members from the community. Given that AERD is more prevalent in females than males at a 3:1 ratio, we expected a similar distribution among survey respondents. However, the proportion of female respondents to our survey was higher than expected (88%). This may be explained by the fact that women have been found to use the internet more often than men to search health-related information and in particular, women use health forums and blogs more often than men [16]. Our survey was posted on the AERD Samter’s Triad Support Group on Facebook and it is possible that the majority of the members of the group are female.