6.2.6. Patient-reported outcome measures – extract from ESC/ERS Guidelines on the diagnosis and treatment of pulmonary hypertension


“A patient-reported outcome measure (PROM) is a term for health outcomes that are ‘self-reported’ by the patient. It is the patient’s experience of living with PH and its impact on them and their caregivers, including symptomatic, intellectual, psychosocial, spiritual, and goal-orientated dimensions of the disease and its treatment. Despite treatment advances improving survival, patients with PAH present with a range of non-specific yet debilitating symptoms, which affect health-related quality of life (HR-QoL).281,282

Patient-reported outcome measures remain an underused outcome measure. Tools validated in patients with PAH should be used to assess HR-QoL282,283 in individual patients. There has been a reliance on generic PROMs, which have been studied in patients with PAH but may lack sensitivity to detect changes in PAH.284,285 To address this, a number of PH-specific HR-QoL instruments have been developed and validated (e.g. Cambridge Pulmonary Hypertension Outcome Review [CAMPHOR],286 emPHasis-10,282,287 Living with Pulmonary Hypertension,288 and Pulmonary Arterial Hypertension-Symptoms and Impact [PAH-SYMPACT]).289 These disease-specific PROMs track functional status, clinical deterioration, and prognosis in PAH, and are more sensitive to the differences in the risk status than generic PROMs.290,291 In addition, HR-QoL scores provide independent prognostic information.287


Source: ESC/ERS Guidelines on the diagnosis and treatment of pulmonary hypertension

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