Is Quarantine for COVID-19 Pandemic Associated with Psychological Burden in Primary Ciliary Dyskinesia? A Prospective Study.

Abstract Background: Primary ciliary dyskinesia (PCD) is a rare disorder with variable disease progression. Information on the psychological impact of the Coronavirus Disease 2019 (COVID-19) quarantine in PCD, a condition with characteristics of personal and familiar increased stress due to frequent pulmonary exacerbations and high risk of lung function deterioration, is lacking. We designed a prospective study to assess the psychological burden and parental stress during the COVID-19 lockdown in Italy in a PCD population.Methods: Questionnaires assessing psychological well-being were administered to 10 PCD patients =15 years-old (Group B: Psychological General Well-Being Index) and to 27 controls. We compared the PCD pulmonary exacerbations from the beginning of the outbreak and the frequency of weekly chest physiotherapy sessions during quarantine to the same period in 2019. Results: Seventy percent of Group A cases did not present parental stress levels. Ninety percent of Group B subjects did not show scores indicating distress. Groups A and B showed no significant difference versus controls in parental stress and psychological well-being, respectively. In the whole PCD population pulmonary exacerbations from the beginning of outbreak were less than in the same period of 2019 (p<0.05), and weekly chest physiotherapy sessions significantly increased during the quarantine compared to the same period of 2019 (p<0.05).Conclusions: We found that during COVID-19 quarantine, a PCD population in Italy neither developed psychological distress nor had a psychological burden significantly different than controls. We speculate that the low pulmonary exacerbation rate, explained by lower exposure to infectious triggers or by improved compliance to weekly chest physiotherapy, likely contributes to the psychological well-being of PCD patients and their families. The evaluation of the psychological burden and parental stress is a valuable tool for measuring the emotional impact of PCD and ultimately improving the medical care to PCD patients and their families, especially when exceptional events such as a pandemic occur.