Pandemic Impact Survey on AA / PNH Patients

In July / August 2020, under the leadership of Priv.-Doz. Dr. Fabian Beier started the first round of a survey to record the effects of the SARS-CoV-2 pandemic on AA and PNH patients in Germany. The focus was on the availability of information on COVID-19 and delays in treatments. We were very pleased that the lichterzellen foundation and our association were included in the design of the survey.

The evaluation of the first round of questions showed that around 20% of the respondents had little or no access to Had information about COVID-19 that they needed in connection with their illness. A third of the patients received little or no information on this from their treating physician; both statements were true for 17%.

The treating physicians had postponed appointments for 32% of the survey participants, 20% of the respondents also stated that their therapy had been postponed due to the pandemic, in 3% of the patients even an inpatient therapy that was already planned. 14% of the patients received a (video) telephone consultation.

The lack of information available about COVID-19 at the time of the survey shows the need for easily accessible information for patients. The effects of the postponements are being observed.

The second round of the survey is planned for the beginning of 2021, the third and last round in summer 2021. If you have participated in the first round, please also take part in these follow-up surveys so that further information can be gained about the effects of the pandemic on us patients. Your participation is important! We will publish information on this on our website.