Conference: 2014 International PHA Conference and Scientific Sessions
Release Date: 06.22.2014
Presentation Type: Abstracts
File Download: 2014 Conference Abstract - McCollister
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Background: Although several studies have shown that PAH is associated with increased rates of depression, little is known about the global, psychosocial and practical impact of PAH on patients and their caregivers.
Objective: Qualitative face-to-face interviews and quantitative questionnaire surveys performed to better understand the impact that PAH has on the “whole” patient and their caregiver.
Method: Data was collected by means of a self reports using market research methodology. A steering committee of PAH specialists and representatives from the Pulmonary Hypertension Association (PHA) US guided development of the content and data analysis to ensure medical and practical relevance. Qualitative phase 1:31 interviews with patients/caregivers (19/12) to identify key themes. Quantitative phase 2: 155 patients/caregivers completed questionnaires (76/79).
Results: Four key domains impacted by PAH were identified: physical, practical (including financial), emotional and social. Work was negatively affected in patients and their caregivers; leaving many families with below average incomes. Patients expressed strong negative emotional impact with feelings of isolation, anhedonia, frustration, being misunderstood, anger & low self-esteem. Patients and their caregivers reported negative impact on intimacy. Caregivers reported feeling stressed caring for their relative and trying to meet other responsibilities. Information provision by healthcare professionals was perceived as too little by both groups, with patient organizations emerging as major source of information and support.
Conclusion: In the US, PAH has a severe and underappreciated global impact on both patients and their caregivers. Comprehensive care for PAH patients and their caregivers should address issues beyond the physical symptoms. Multidisciplinary care teams are needed to optimize PAH patient care and should also address practical, emotional and social aspects of health.
Disclosure: Supported by an unrestricted grant to PHA from Actelion Pharmaceuticals Ltd, Switzerland.