To develop a patient-reported questionnaire to investigate the impact of PAH (pulmonary arterial hypertension) on patients' daily lives in terms of bothersomeness and disability.
A 3-steps study protocol was initiated in 2011 to develop a patient reported outcome measure (PROM) in PAH.The first two steps have been completed (qualitative study and Delphi consensus study) leading to the development of a provisional 37-items questionnaire. A reduction of items in this provisional questionnaire and the validation of the final questionnaire are the goals of the current study.
Study Type
OBSERVATIONAL
Enrollment
120
Patient will answer the PAH-DBoQ questionnaire
Centre de Référence de l'Hypertension Pulmonaire Sévère, Service de Pneumologie et Soins Intensifs, Hôpital de Bicêtre,
Le Kremlin-Bicêtre, Val De Marne, France
RECRUITINGCronbach's alpha≥ 0.7
Internal consistency of the PAH Disability and Bothersomeness Questionnaire will be assessed with Cronhbach's alpha
Time frame: at the end of the study (an average of 6 months)
Low rate of answers (≤95%)
low rate of answers will help reducing the number of questionnaire's items
Time frame: at the end of the study (an average of 6 months)
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