Observational study of health utilities in adult primary ciliary dyskinesia patients: preliminary data on associations with molecular diagnosis, clinical phenotype and HRQOL measures.

Panayiotis Kouis,Maria G. Kakkoura,Stavria Artemis Elia,Phivos Ioannou,Pinelopi Anagnostopoulou,Louiza Potamiti,Maria A. Loizidou,Mihalis I. Panayiotidis,Kyriacos Kyriacou,Andreas Hadjisavvas,Panayiotis K. Yiallouros

Multidisciplinary respiratory medicine（2022）

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摘要

Our study demonstrates that HU elicitation in PCD is feasible using both direct and indirect methods. Overall, HU scores are relatively high among adult patients, with higher scores observed in SG and TTO, followed by EQ5D and VAS. VAS and EQ5D HU values are sensitive to lung function as well as to QOL-PCD physical functioning and lower respiratory symptom scores.

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Primary ciliary dyskinesia,health utilities,quality of life,rare disease

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