Palliative care in pulmonary arterial hypertension
Research type
Research Study
Full title
A study to investigate the role of palliative care for patients with Pulmonary Arterial Hypertension
IRAS ID
189781
Contact name
Sarah Woolcock
Contact email
Sponsor organisation
The Newcastle upon Tyne Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 1 months, 26 days
Research summary
Pulmonary arterial hypertension (PAH) is a severe, progressive condition leading to right heart failure and death. Without treatment PAH is associated with poor prognosis. Patients often have an unpredictable disease course and may fail to respond to treatment leading to distressing symptoms and reduced quality of life. Research has identified significant symptom burden for patients as well as complex psychological and social needs. Barriers around understanding of palliative care and awareness of available services have also been identified. The unpredictability of PAH makes the timing and delivery of palliative care in PAH difficult, recurrent hospital admissions are common and many patients die in hospital.
Review of the delivery and organisation of palliative care in PAH has potential to impact significantly on patient care and quality of life. There is uncertainty, however, around the role and timing of palliative care in PAH in current UK guidelines. The aim of this research project is to increase understanding of current practice in the UK and explore understanding and attitudes towards palliative care in PAH from the perspective of patients and clinicians. In depth semi-structured interviews will be used to explore the perspectives of patients and clinicians from 3 UK tertiary centres, identifying potential individual and organisational challenges and barriers to the delivery and timing of palliative care.
The project will form the basis of an MD thesis for Dr Sarah Woolcock. The research will be supervised by experienced researchers from Newcastle University with extensive knowledge of Pulmonary Hypertension and qualitative methodology, supported by colleagues experienced in palliative care. The project is supported and funded by a charitable grant from the Pulmonary Hypertension Association, the UK’s leading PAH patient group. Through this work we hope to increase understanding of current practice in the delivery of palliative care and lay foundations for future service development.REC name
North East - York Research Ethics Committee
REC reference
16/NE/0041
Date of REC Opinion
17 Mar 2016
REC opinion
Further Information Favourable Opinion