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Aim: 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). Subject and methods: 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. Results: 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. Conclusion: 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.

Individuals with Primary Immunodeficiency Disease (PID) have increased risk for infection, autoimmune conditions, and inflammatory disorders. Cognitive impairment, also referred to as brain fog, has been recognized in other medical conditions and as a side-effect of treatments; however, it has not been previously reported in individuals with PID. The phenomenon of brain fog is recognized in other autoimmune or inflammatory conditions, including lupus, multiple sclerosis, chronic fatigue syndrome, and has resulted from chemotherapy treatment for cancer. This research investigates the self-reported memory function of individuals with a diagnosis of PID. Respondents completed a survey which used reliable and valid questionnaires: Memory Functioning Questionnaire, Beck’s Depression Inventory II, and Beck’s Anxiety Inventory. Of the 292 completed surveys, 133 did not report any comorbid neurological diagnosis or incident of concussion (both of which could influence perceived memory function). When compared to normative scores, the respondents in this study were found to have significantly greater perceived memory impairment. The respondents had a significant higher score for anxiety and depression as compared to non-anxious and non-depressed normative values. This study finds that individuals with a diagnosis of PID have a greater degree of perceived memory impairment, or brain fog, in addition to greater levels of anxiety and depression. Individuals with a diagnosis of PID would benefit from prospective surveillance through a comprehensive neuropsychological assessment to track cognitive status and implement corrective measures, should any decline be identified.