Development and validation of a questionnaire to measure patient's experiences of health care in pulmonary arterial hypertension outpatient clinics

Background Measuring the patients’ experience of care at an outpatient clinic can provide feedback about the quality of health care and if needed, can be support for quality improvements. To date, there is no patient reported experience measurement (PREM) developed targeting patients at the pulmonary arterial hypertension (PAH) outpatient clinics. Therefore, the aim was to develop and evaluate the psychometric properties of a PREM scale to be used for patients at PAH-outpatient clinics. Methods The development and psychometric evaluation of the PREM for patients at PAH outpatient clinics followed two stages: (I) development of the PAH Clinic PREM (PAHC-PREM) scale based on interviews with patients; and (II) psychometric evaluation of the PAHC-PREM scale including data quality, factor structure (construct validity), criterion validity and internal consistency. Results A sample of 156 patients at PAH outpatient clinics completed the PAHC-PREM scale (median age 69 years, 57% women). Unidimensionality of the PAHC-PREM scale was supported by parallel analysis. A single factor explained 67% of the variance. Inter-item and item-total correlations were satisfactory (0.46–0.88 and 0.64–0.91, respectively). Internal consistency reliability with ordinal coefficient alpha was good (0.93). Conclusions The PAHC-PREM scale was demonstrated to have good psychometric properties and is now ready to be used to measure quality of health care experience from patients at PAH-outpatient clinics.