Martin A
Crystallise Ltd., East Tilbury, UK

OBJECTIVES:  To create an evidence map of the different patient-reported outcome instruments used in studies of patients with pulmonary arterial hypertension (PAH), the geographical settings in which these studies were conducted and the interventions assessed. METHODS: We searched the database ( for PRO studies on PAH published between 1960 and May 16 2017, and analysed the abstracts identified by the search to determine the different PRO instruments cited across the range of geographical locations and interventions. We presented the findings as an evidence map. RESULTS: We found a total of 70 abstracts that reported the use of 30 different PRO instruments. Of these, seven instruments were specific for PAH, two were designed for use in any respiratory disorder and three in heart failure, 13 were general instruments used to evaluate quality of life or utilities, one assessed the impact of treatments, and nine assessed symptoms or comorbidities of people with PAH or its underlying diseases. The most frequently used tool was the SF-36 in 41 abstracts, followed by the Minnesota Living with Heart Failure Questionnaire (9), CAMPHOR (8), Borg Dyspnoea Index, EQ-5D and St George’s Respiratory Questionnaire (6 each). Studies generally recruited patients with any PAH (40 abstracts) or CTEPH (10), but some studies focused on PAH only in patients with COPD (3), congenital heart disease (7) or systemic connective tissue/intestitial diseases (12). The USA was the most frequent location for the studies, with 14 abstracts, followed by the UK (10) then Australia, Canada and France (4 each). The main interventions assessed were bosentan (12 abstracts) and sildenafil (6). CONCLUSIONS: A wide range of PRO tools have been used in studies of PAH, but most used the SF-36, with the US or UK the most common locations.

Conference/Value in Health Info

2017-11, ISPOR Europe 2017, Glasgow, Scotland

Value in Health, Vol. 20, No. 9 (October 2017)




Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes


Cardiovascular Disorders

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