Adults with PCD (n=33) | Adolescents with PCD (age 12–17 years, n=17) | Children with PCD (age 6–11 years, n=7) | Mothers (n=24) | Fathers (n=22) | ||||||
Mean | (sd) | Mean | (sd) | Mean | (sd) | Mean | (sd) | Mean | (sd) | |
Anxiety (GAD-7)# | 4.3 | (3.1) | 5.4 | (2.9) | 3.0 | (4.4) | 6.2 | (6.2) | 3.0 | (3.3) |
Depression (PHQ-9)¶ | 5.6 | (4.2) | 5.5 | (3.5) | 3.6 | (4.2) | 5.4 | (4.7) | 3.1 | (3.8) |
Health-related quality of life (QOL-PCD) domains | ||||||||||
Physical Functioning | 65.3 | (29.2) | 87.5 | (15.0) | 84.8 | (14.8) | ||||
Emotional Functioning | 81.9 | (13.1) | 73.4 | (7.6) | 76.2 | (13.1) | ||||
Social Functioning | 34.7 | (27.0) | 62.5 | (19.7) | 91.4 | (10.7) | ||||
Treatment Burden | 60.9 | (23.2) | 74.8 | (22.4) | 80.0 | (26.1) | ||||
Role Functioning | 66.2 | (25.4) | 86.8 | (15.3) | ||||||
Vitality | 55.9 | (19.3) | 60.4 | (14.6) | ||||||
Health Perceptions | 50.8 | (22.6) | ||||||||
Upper Respiratory Symptoms | 55.1 | (21.6) | 69.6 | (19.3) | 75.2 | (17.5) | ||||
Lower Respiratory Symptoms | 51.3 | (18.7) | 58.9 | (19.1) | 73.0 | (10.4) | ||||
Hearing Symptoms | 68.2 | (32.9) | 83.9 | (18.1) | 86.9 | (10.6) |
PCD: primary ciliary dyskinesia; GAD-7: Generalised Anxiety Disorder 7-Item; PHQ-9: Patient Health Questionnaire-9; QOL-PCD: Quality of Life Instrument for Primary Ciliary Dyskinesia. #: Scores (0–21), scores ≥10 are considered clinically elevated. ¶: Scores (0–27), scores ≥10 are considered clinically elevated.