Living with primary immunodeficiency disease during the Covid-19 pandemic

The purpose of this survey study was to investigate the impact of Covid-19 on the lives of individuals living with primary immunodeficiency disease (PID).

An online survey was distributed through social media to individuals with a diagnosis of PID to investigate behaviors and concerns during the Covid-19 pandemic.

Five hundred and fifty seven responses were collected, of which 495 surveys were 100% complete; partial responses were analyzed. Respondents have been extremely cautious and have minimized their potential Covid-19 exposure risk. In this study, 56.6% (n = 289) participated in telehealth visits with the physician responsible for managing their PID during the Covid-19 pandemic. Respondents reported they would be somewhat comfortable with returning to normal activities if there was widespread herd immunity (40.9%, n = 209), an effective vaccine (46.0%. n = 235), or public health protections (44.0%, n = 225). The majority of respondents were extremely concerned (57.3%, n = 293) about additional waves of Covid-19 cases when their state or country reopens.

The PID community is aware of the health risks posed by this public health crisis, and have done as much as possible to minimize their risk to community exposure. This pandemic has highlighted the importance of continuous medical care for a vulnerable population through the use of telemedicine. Healthcare providers should be aware of the emotional burden and increased psychiatric distress, often presenting as fear, anxiety, or depression, in patients with a chronic medical condition during a public health crisis such as the Covid-19 pandemic.