How do patients and physicians communicate about hereditary angioedema in the United States?

BACKGROUND: Hereditary angioedema (HAE) is a rare disease that manifests as recurrent and debilitating angioedema attacks, significantly impacting patients' quality of life. OBJECTIVE: To assess communication dynamics between patients with HAE and treating physicians and the impact this has on the treatment of HAE in the United States. METHODS: This observational study used an institutional review board-approved protocol to collect four sources of patient-physician communication data from the period between January 2015 and May 2017: in-office conversations between patients aged ≥18 years with HAE and physicians, follow-up dictations with physicians, telephone interviews with patients and physicians, and publicly available social media posts from patients. Participant language was qualitatively assessed and key communication elements and communication gaps identified. RESULTS: Twenty-five in-office conversations, 14 follow-up physician dictations, and 17 telephone interviews were conducted with a total of 29 unique patients, 4 caregivers, and 14 physicians. In-office conversations were generally physician-driven and focused primarily on symptom frequency, location, and severity; lexicon from both parties centered on "episodes" and "swelling." During visits, impact on quality of life was not routinely assessed by physicians nor discussed proactively by patients; however, during telephone interviews and online, patients frequently described the multifaceted burden of HAE. Patients highlighted the difficulties they experience by using repetition, emphasis, and metaphors; they also varied the descriptors used for attacks depending on the communication goal. Physicians used intensifiers to emphasize the necessity of rescue medication access, whereas prophylactic treatments were positioned as an option for frequent or laryngeal attacks. CONCLUSION: Vocabulary differences suggest that the full impact of HAE is not consistently communicated by patients to physicians during clinical visits, indicating the potential for misaligned understanding of disease burden. A patient-driven, rather than physician-driven approach to the discussions may elicit valuable information that could help to optimize treatment approaches.

Early contrast enhancement of the liver: exact description of subphases using MRI.

PURPOSE: The purpose of this study was to describe the subphases of early post-contrast enhancement of the liver, using vessel enhancement patterns, and correlate these findings with enhancement patterns of abdominal organs. MATERIALS AND METHODS: A total of 114 patients who underwent gadolinium-enhanced abdominal magnetic resonance imaging examinations constituted the final study group, of which 56 were women (age range, 3-94 years; mean, 50 years) and 58 were men (age range, 6-85 years; mean, 54 years). Early post-contrast sequences in all patients were evaluated retrospectively by two reviewers for the determination of the presence of contrast enhancement in predetermined major vessels of the abdomen and qualitative and quantitative extent of enhancement of the renal cortex, spleen, pancreas and liver. Based on the overall findings, subphases of early contrast enhancement of the liver were described and quantitative extent of enhancement of organs was correlated with subphases of early contrast enhancement of the liver. Mann-Whitney U test and one-way unbalanced analysis of variance tests were used for the comparisons. RESULTS: Early hepatic arterial phase was observed in 14/114 patients, mid-hepatic arterial phase in 23/114 patients, late hepatic arterial phase in 33/114 patients, splenic vein only hepatic arterial dominant phase in 20/114 patients and hepatic arterial dominant phase in 24/114 patients. There was an overall association between the subphases of enhancement and the quantitative extent of enhancement for all studied organs (P<.0001). CONCLUSION: The evaluation of vessel and organ enhancement patterns has allowed the characterization of five different subphases in early post-contrast enhancement of the liver. The quantitative extent of enhancement of abdominal organs also demonstrated significant correlation with these five subphases.