Patient Interpretation and Implementation of Air Embolism Prevention Guidelines in Hereditary Hemorrhagic Telangiectasia (HHT): A Survey-Based Study

Background To assess how patients interpret and adhere to the International HHT Guidelines’ recommendation to avoid intravenous (IV) air, and to evaluate whether misinterpretation of this guidance as a strict requirement for in-line bubble filters may inadvertently hinder access to care. An anonymous 15-question survey was distributed to 7,000 members of the HHT Research Network. The survey assessed awareness of the guideline, perceived necessity of bubble filter use, and the practical consequences of filter use. Responses were excluded if incomplete or submitted by individuals under 18 years old. Results Of the 596 responses received (9% response rate), 446 met inclusion criteria. Most respondents (79%) were aware of the guideline, and 66% interpreted it as requiring use of an IV bubble filter. Notably, 16% of respondents reported refusing care, and 25% reported delaying treatment—most often patient-initiated—due to perceived filter requirements. The interventions affected included essential and, in some cases, urgent care. In total, 20 respondents (4%) reported experiencing a transient ischemic attack (TIA) during IV therapy; two of these occurred despite filter use, and none resulted in permanent deficits. Patients who did not use filters were significantly less likely to report difficulty accessing care (p < 0.05). Conclusions Although the guideline advises caution in avoiding IV air, many patients interpret it as mandating bubble filter use. This misunderstanding has been linked to delays in necessary care, increased patient frustration, and limited treatment access. These findings underscore the importance of clearer communication and education around guideline intent to mitigate unintended consequences.