PT  - JOURNAL ARTICLE
AU  - Kouis, Panayiotis
AU  - Elia, Stavria Artemis
AU  - Kakkoura, Maria G.
AU  - Ioannou, Phivos
AU  - Anagnostopoulou, Pinelopi
AU  - Yiallouros, Panayiotis K.
TI  - Health state utilities in adult Primary Ciliary Dyskinesia patients
AID  - 10.1183/13993003.congress-2020.1666
DP  - 2020 Sep 07
TA  - European Respiratory Journal
PG  - 1666
VI  - 56
IP  - suppl 64
4099  - https://publications.ersnet.org//content/56/suppl_64/1666.short
4100  - https://publications.ersnet.org//content/56/suppl_64/1666.full
SO  - Eur Respir J2020 Sep 07; 56
AB  - Background: Primary Ciliary Dyskinesia (PCD) is characterized by chronic respiratory morbidity but there are limited data on patients’ health-related quality of life (HRQoL) and Health Utilities (HU) that PCD patients attach to their overall health status. We aimed to assess HU in adults with PCD using direct and indirect valuation methods and identify factors determining HU in PCD.Methods: Participants completed three direct tools (Visual Analog Scale-VAS, Time Trade Off-TTO, Standard Gamble-SG), one indirect HU questionnaire (EuroQol 5 dimensions-EQ-5D) as well as the PCD specific HRQoL questionnaire (QOL–PCD). Clinical and lung function data were extracted from medical records. We examined associations of gender, age (median cut-off: 33.6), FEV1 (median cut-off: -2.00 z-score) and FVC (median cut-off: -1.47 z-score) with HU using the Mann-Whitney test. The QOL–PCD scales that determined the HU were identified using regression modeling.Results: For 31 adult PCD patients in total, median HU values were for VAS:0.75, for EQ-5D:0.86, for TTO:0.91 and for SG:0.99. Low FEV1 (0.67 Vs 0.80, p=0.002) and low FVC (0.67 Vs 0.81, p=0.002) were associated with worse VAS. The same applied for EQ-5D and low FEV1 (0.76 Vs 0.91, p=0.001) and FVC (0.80 Vs 0.88, p=0.019). Among 10 QOL-PCD scales, physical functioning and lower respiratory symptoms, explained much of the variability in HU as measured by VAS (R2:0.42) and EQ-5D (R2:0.54).Conclusions: HU in PCD is high but depends on the valuation method. VAS and EQ-5D HU values are sensitive to lung function as well as to QOL-PCD physical functioning and lower respiratory symptom scores. TTO and SG were not sensitive to the examined factors and their applicability in PCD may be limited.FootnotesCite this article as: European Respiratory Journal 2020; 56: Suppl. 64, 1666.This abstract was presented at the 2020 ERS International Congress, in session “Respiratory viruses in the "pre COVID-19" era”.This is an ERS International Congress abstract. No full-text version is available. Further material to accompany this abstract may be available at www.ers-education.org (ERS member access only).