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Purpose: Chronic sleep issues can lead to poor quality of life and increased mortality and patients with chronic health conditions often report impaired sleep quality. Higher levels of fatigue have been identified in patients diagnosed with inborn errors of immunity (or primary immunodeficiency diseases). This research sought to better understand perceived sleep quality in individuals diagnosed with IEI., Methods: A survey, which included the validated Sleep Quality Scale, was shared across multiple social media groups for individuals with a diagnosis of IEI., Results: Most of the participants were White/Caucasian females, between the ages of 30 and 74 years. The results of the Sleep Quality Scale suggest that this sample of individuals has moderate impairment of their sleep quality (71.8%), with a mean score of 43.0 (SD = 13.1). When comparing the results of the SQS to other patient populations and healthy control groups, the participants in this study had a poorer sleep quality score. Associations were identified between sleep quality and age, hours of sleep per night, time awake at night, times awake to urinate, attempted daytime naps, chronic pain, and mental health diagnoses., Conclusion: This survey suggests that individuals with inborn errors of immunity have a moderate degree of perceived impairment in sleep quality. Healthcare providers are strongly encouraged to incorporate sleep quality screening in their routine assessments of patients with a diagnosis of Inborn Error of Immunity. Patients who are identified as having impaired sleep quality should be referred for further testing and interventions., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

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., Competing Interests: Conflict of interestThe authors declare they have no conflict of interest., (© The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature 2021.)

Background: Routine exercise has been established as an effective way to improve overall health. The value of exercise has been established in many diseases, however, there are no studies investigating the impact of exercise for individuals with primary immunodeficiency disease (PID). The purpose of this study was to investigate exercise perceptions and behaviors in individuals diagnosed with PID., Methods: An online survey was distributed over a four-week period., Results: Of the 264 responses collected, most were females, 45-54 years old. Respondents reported a measurable loss of function impairing their daily activities due to loss of mobility/physical activity (41.32%), or loss of lung/pulmonary function (40.08%,). They felt exercise decreased stress level and improved their mental well-being (46.25%). Some indicated they participate in exercise (33.20%), while 36.84% had not participated in exercise for at least 1 year. Exercise was limited primarily due to fatigue (86.97%)., Conclusion: Exercise is important for those with chronic medical conditions. Most individuals living with PID can participate in low/moderate physical activity, but struggle with vigorous physical activity, since fatigue is the greatest barrier. Respondents view exercise as beneficial, and would like to increase participation in an exercise program.