This study aims to develop and validate a culturally appropriate, reliable, and clinically applicable patient-reported outcome (PRO) instrument to assess quality of life in patients with pulmonary arterial hypertension (PAH) in China.
The study includes two phases: (1) scale development using literature review, Delphi expert consultation, and patient interviews; and (2) multicenter prospective observational validation to evaluate reliability, validity, and responsiveness.
The final scale is expected to support clinical assessment, treatment monitoring, and health policy decision-making.
Age ≥18 years
Diagnosed with pulmonary arterial hypertension
Able to read and complete questionnaires
Provided informed consent
Severe physical condition preventing participation
History of psychiatric disorders or current use of psychiatric medication
Pregnancy or lactation
Any condition preventing completion of questionnaires
Adult patients diagnosed with pulmonary arterial hypertension receiving routine clinical care in tertiary hospitals in China.
Cohort
Prospective
Questionnaire Assessment
Other interventionParticipants complete quality of life questionnaires and clinical data are collected. No therapeutic intervention is applied.
Psychometric properties of the PAH-QoL scale
Evaluation of the psychometric properties of the PAH-specific quality of life scale, including internal consistency (Cronbach's alpha), test-retest reliability (intraclass correlation coefficient), and construct validity assessed by factor analysis.
Correlation with clinical parameters
Association between quality of life scores and clinical indicators, including WHO functional class and 6-minute walk distance.
Responsiveness of the PAH-QoL scale
Ability of the scale to detect changes in patient condition over time.
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