Impact of COVID-19 pandemic on information management and adherence to replacement therapy with AAT of patients with alpha-1 antitrypsin deficiency (AATM)

Methods In March 2021, a 19-item survey was sent to 420 patients with AATD who were being treated with AAT replacement therapy (prolastin) and who participated in the German AlphaCare patient program. Results The majority of the respondents ( 55.9%; 138) had been diagnosed with AATD >= 10 years prior to the survey and most ( 93.5%; 231) felt adequately informed about their disease through their physician, AlphaCare and Alpha1 Deutschland. The majority of respondents were concerned/very concerned about acquiring COVID-19. Only 1.2% of the respondents reported having been infected with SARS-CoV2, less than the infection rate in the general population at that time ( 3.4%). Almost all of the respondents fully agreed/agreed that they had restricted their social contacts due to the pandemic. A substantial percentage of the responding patients fully agreed/agreed that they were concerned about being infected with COVID-19 during a visit at their doctor's office or clinic. Regarding AAT augmentation therapy, only 18 respondents reported discontinuing therapy during the pandemic, but most of these discontinuations were short-term - one was permanent. Conclusions These survey results suggest that AATD patients are well-informed about the risks of COVID- 19 with their condition and practised self-protection measures. This may have resulted in an COVID-19 infection rate lower than the general population. Although respondents were concerned about exposure to COVID-19 in their doctor's office or clinic, very few discontinued therapy even temporarily.