Impact of the COVID-19 pandemic on physical and mental health among individuals with primary immunodeficiency: results of a nationwide survey

Abstract

The swiftly spreading COVID-19 pandemic may differentially affect individuals with primary immunodeficiencies (PIDs), who have variable infection risk, immune-dysregulation and report worse health-related quality of life (HRQoL) than the general population. Our objective was to assess the impact of COVID-19 on healthcare access, physical and mental health among adults with PIDs. Using data from the ongoing Immune Deficiency Foundation longitudinal surveys [April-June 2020 (IRB exempt)] on individuals with PIDs that opted-in [∼9% response-rate (2086/ 22,341 emails)], we included adults with available PROMIS global health/ HRQoL questions. New healthcare access problems during COVID-19 (immunoglobulin replacement (IgRT) delays, location/ product changes, medication issues or missed appointments) and resulting negative impact on physical/ mental health were analyzed using Chi-square (Fisher’s exact)/ t-tests/ Mann-Whitney tests. Of the 565 adults included (∼30% of adults that opted-in), majority were females [86% (485/561)] and antibody defects were the most common diagnosis [96% (543/565)]; 90% (507/565) on IgRT. While 63% (359/565) reported healthcare access problems, IgRT issues were infrequent [4% (23/565)]. Mean PROMIS global physical (39.6) and mental health scores (43.5) were below the national average (p <0.001) (longitudinal follow-up ongoing). Individuals with healthcare access problems more often reported a moderate-severe negative impact on their physical and mental health vs. those without access issues [84% (103/123) vs 58% (250/428), p< 0.01 and 70% (204/291) vs 57% (149/260), p< 0.01 respectively]. Healthcare access issues are common during COVID-19 and negatively impact physical and mental health among individuals with PIDs providing insight into potentially modifiable factors.