Symptoms, quality of life and place of care study
Research type
Research Study
Full title
A prospective feasibility study to compare patient reported outcomes, health service utilisation and place of care/death between patients with advanced heart failure attending a palliative cardiology clinic and a control group of those receiving usual care.
IRAS ID
135512
Contact name
Miriam Johnson
Contact email
Sponsor organisation
NHS Greater Glasgow & Clyde Health Board
Duration of Study in the UK
0 years, 10 months, 2 days
Research summary
People with advanced chronic heart failure (CHF) have palliative care needs which are similar in nature and quantity to people with cancer, often over a longer period of time and with inadequate access to supportive and palliative care services. In the UK, the NICE Quality Standards for heart failure treatment state that “…people with moderate to severe chronic heart failure, and their carer(s), have access to a specialist in heart failure and a palliative care service.” Whilst we do not yet have clear results from formal trials to show that palliative care service interventions improve outcomes for people with CHF, observational studies suggest continued unmet palliative care need and poor access to palliative care services.
Therefore, the tripartite partnership (Caring Together) between Marie Curie Cancer Care, the British Heart Foundation and NHS Greater Glasgow and Clyde was established to develop models of care to improve the quality of, and access to, palliative care for patients with advanced CHF. This study forms part of ongoing evaluation of these new services.
We wish to observe patient-reported symptoms and quality of life, health service use and support for patients’ preference for place of care and death in a group of 50 out-patients with advanced CHF receiving the Caring Together model of care compared with a group of 50 out-patients who do not over four months.At baseline we will document: demographic and clinical data, symptoms, quality of life, health status, carer burden, future care preferences, health service use. During follow up, we will also measure survival, place of care/death, referral to Caring Together (control group) and non-attendance to Caring Together (intervention group).
Data from this study will inform the design of a future planned randomised controlled trial, we will measure recruitment rate, attrition and data completion.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
14/LO/1813
Date of REC Opinion
7 Oct 2014
REC opinion
Further Information Favourable Opinion