This is the first study to provide data on the mental health of patients with antibody deficiency. It is also the first study in the UK examining the impact of the COVID pandemic on clinical and psychological wellbeing in patients with immunodeficiency. Our study demonstrated a reduction in infection frequency among patients with antibody deficiency during the COVID-19 pandemic, both in those who changed to home IGRT and in the group who had no change in IGRT (in which 94.6% received home IGRT). This is significant in our patients who are susceptible to recurrent infections and their associated sequelae. This effect has been noted in the general population more widely and is likely due to reduced circulating respiratory viruses [15, 18]. Interestingly, we noted stable trough levels in all groups including the hospital IGRT group who moved to a reduced frequency of IGRT administration. Our centre has continued to administer 6 weekly IGRT, given the benefits of reduced infections and fewer hospital visits. Further study, including health economic analysis, is required to determine the long-term effects of this change.

We also explored levels of anxiety, depression, and quality of life in adult patients with antibody deficiency during the COVID pandemic, and whether there was an impact of changes in modality of receiving treatment on psychological wellbeing. Our results showed similar, rates of anxiety and depression in January 2021 than the general population reported in the initial surges of COVID in March to May 2020 [13, 19,20,21,22]. On the contrary, rates of fatigue were higher in comparison to the pre-COVID population norm and interestingly even higher than the people who had been recently discharged from hospital for COVID [17]. These results for anxiety and depression are surprising, given previous research during non-COVID times has reported an increased prevalence of anxiety, depression and fatigue in patients with immunodeficiency [23]. Pulvirenti et al. (2020) noted raised levels of anxiety and depression in patients with immunodeficiency during the initial surge of COVID in Italy [12]. It is not yet known whether elevated levels of mental distress seen in the general population have continued as the pandemic has gone on, restrictions have been lifted and as people have been vaccinated. O’Connor and colleagues (2020) noted that levels of anxiety and depression decreased as time progressed within the pandemic, although their last point of data collection was May 2020 [20]. Participants completed our survey in January 2021, and it may be that the general population were reporting lower levels of anxiety and depression by this stage. It is worth mentioning that vaccination for COVID-19 in the UK started in December 2020. Unfortunately, we do not have comparison data for our cohort on psychological wellbeing pre-COVID. Regardless of this, it is important to note that nearly a third of patients (51/166, 30.1%) could have benefited from psychological support to manage anxiety and/or low mood.

No significant differences were found in levels of anxiety, depression, or fatigue between IGRT treatment modality. However, further investigation is needed to ensure patients are adequately supported in their choice of treatment modality going forward.

The results also suggest that just under a half of patients reported a decline in their quality of life since the start of the pandemic. Patients with immunodeficiency may have faced greater uncertainty and restrictions than the general population during the first and second surges, and the uncertainty associated with the pandemic remains high for this patient cohort as the efficacy of the vaccination is currently unknown. Elran-Barak and Mozeikov (2021) previously found that a third of immunocompromised patients reported feeling lonely before lockdown measures were even put in place, and that loneliness was a significant contributor to declining self-reported measures [24]. The increased shielding measures taken by this cohort of patients are likely to influence levels of loneliness and subjective mental/physical health. Further comparison research is needed, specifically longitudinal studies with a larger cohort that can closely map changes in healthcare and population health due to the pandemic. Poor mental health has been associated with poorer treatment adherence, less effective help seeking and higher rates of unhealthy behaviours, and these findings demonstrate the need for patients to have access to psychological support, and prompt psychological reassessment of patients with immunodeficiency [25, 26].

Our study has potential limitations. The study groups were not equal, with only a small group of patients moved to home IGRT. This is likely due to the logistical difficulty in arranging training sessions for home administration of IGRT at the onset of the pandemic. The study is a survey based retrospective study to understand psychological wellbeing in patients with antibody deficiency who were asked to shield during the COVID pandemic. The time frames of comparison between the patient cohorts (January 2021) and the general population were different (March to May 2020). However, the patient circumstances were likely to be similar during these times as patients were asked to limit social interactions due to perceived increased risk of COVID infection in immunodeficiency patients. Quality of life (QoL) was also collected to determine patient satisfaction criteria. This was not collated in a standardised mechanism, and thus was not included in statistical analysis and primary study outcomes. Pre-existing mental health conditions were not investigated in the survey. We used Indices of multiple deprivation (IMD) score as a weighted calculation of socio-economic status of our studied cohort.

Infections were self-reported by patients at the survey and at routine consultations with their physician. Infections were suspected when patients had symptoms such as increased cough frequency and sputum production, although individual symptoms vary between patients. Patients typically take a course of antibiotics upon suspected infection. No patient participants were hospitalised for COVID or other infections during the study period.

Whilst the reduction in reported infections in patients who have had or changed to home IGRT is encouraging, it should be balanced with shielding measures which are likely to influence levels of loneliness and subjective mental/physical health [19]. Further research is needed, specifically longitudinal studies with a larger cohort that can closely map changes in healthcare and population health. Our findings demonstrate the need for prioritised psychological welfare in patients with antibody deficiency, particularly given continued susceptibility of COVID-19 infection and reduced vaccination responsiveness.