Introduction: Current evidence indicates that alexithymic deficits in processing emotions may also affect physical health and that alexithymia may be associated with organic, especially chronic, disorders. Primary ciliary dyskinesia (PCD) is a rare, inherited, autosomal recessive disorder. Uncertainty about the prognosis and evolution of the disease, lack of ongoing medical care, and symptom control often negatively impact the emotional well-being of these patients. We aimed to evaluate the frequency of alexithymia in children with PCD and the possible effects of alexithymia on PCD treatment.

Methods: Patients between 5 and 18 who were followed up for PCD in pediatric pulmonology were included in the study. Patients who did not want to attend the study were also excluded from the study. The patients filled out a questionnaire including the sociodemographic characteristics and the Toronto Alexithymia Scale.

Results: This is an ongoing study and the data expressed here is a preliminary report. A total of 30 patients (18 girls and 12 boys) were included. The total score was 50.52±11.48. The ?difficulty in recognizing emotions? sub-score of the scale was 15.56±6.38, the ?difficulty in expressing emotions? sub-score of 12.73±4.54, and the ?expressive thinking? sub-score of 22.21±3.45. The total score of 4 children was above 60 points and above 50 points in 9 children.

Discussion: This preliminary report has found that about 30% of patients with PCD have alexithymic deficits. This high percentage was previously reported among cancer patients, post-myocardial infarcts, and skin diseases.

Conclusion: Identifying and addressing alexithymia in PCD patients may improve treatment outcomes, associated comorbidities, and health-related quality of life.