PURPOSE: The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) has been newly introduced as the first disease-specific instrument for assessing patient-reported symptoms, functioning and quality of life (QoL) in pulmonary arterial hypertension (PAH). Since it had originally been developed for use in the UK, it was the aim of the present study to create and validate French-Canadian (FC) and English-Canadian (EC) language adaptations.
METHODS: A dual panel methodology according to Hunt et al (1991) was applied: A translation panel (for the FC version) and lay panels (for both versions) were convened to adapt the questionnaires. Subsequently, these new questionnaires were field-tested in 15 FC PAH and 15 EC PAH patients and amended if required. Finally, in a postal validation study, the new language versions of the CAMPHOR underwent psychometric evaluation in 41 FC and 52 EC PAH patients to test for reliability and validity.
RESULTS: The translation and lay panels effectively created the FC and EC CAMPHOR versions. Both in the FC and EC field-test interviews participants found the questionnaires relevant, comprehensible and quick and easy to complete. Only minor changes in wording were required at this stage. Psychometric analyses showed that the FC and EC adaptations were successful. High test-retest coefficients for the scales after controlling for change in respondent’s QoL (FC: 0.92-0.96; EC: 0.85-0.99) indicated a high degree of reliability with little evidence of excessive random measurement error. The FC and EC CAMPHOR scales had good internal consistency (Cronbach’s α coefficients 0.90-0.92 and 0.88-0.92). Predicted correlations with the Nottingham Health Profile, a generic measure of health status, provided evidence of the construct validity of the FC and EC scales. The FC and EC also showed known groups validity.
CONCLUSION: The FC and EC adaptations of the CAMPHOR have been shown to be reliable and valid measures of health related QoL in PAH.
CLINICAL IMPLICATIONS: The validated questionnaires can be recommended for use in clinical studies and routine practice in PAH.
DISCLOSURE: Donna Coffin, Grant monies (from industry related sources) This work was supported by Actelion Pharmaceuticals, Canada.