Developing a Health-related Quality-of-Life (HRQoL) measure ACHD-HF
Research type
Research Study
Full title
Developing and validating a Health-related Quality-of-Life (HRQoL) measure for adults with congenital heart disease and heart failure (ACHD-HF HRQoL measure): Patient and clinician perspectives
IRAS ID
332895
Contact name
Ruth Nicholson
Contact email
Sponsor organisation
Imperial College London
Duration of Study in the UK
3 years, 9 months, 1 days
Research summary
Congenital heart disease (CHD) refers to a range of problems with the heart's structure that are present at birth and affects almost 1 in 100 babies born in the UK and worldwide, with at least over 97% surviving to adulthood highlighting the need for lifetime management (Mandalenakis et al, 2020).
Heart failure remains a common cause of mortality among this population, accounting for at least a quarter of all adult CHD (ACHD) deaths (Hajat & Stein, 2018 & Bredy, 2017). Most congenital heart conditions are associated with a shortened life expectancy and impact on health-related quality of life (HRQoL). While there are many studies investigating the impact of CHD and its sequelae on mortality, the effect of these conditions on patient-reported outcomes, including HRQoL, has not been well-studied. As evident from studies of other medical conditions, including acquired heart failure, understanding patients’ preferences and wishes, through patient-reported outcomes measures, can guide healthcare professionals to provide essential components of patient-centred care. This process can also empower individuals to participate in their care in accordance with their preferences, beliefs, and culture. There is also emerging data suggesting that patients’ perspectives usually differ from those of clinical teams, hence, rigorous assessment of HRQoL is vital to allow the therapeutic strategy to be better aligned with patients’ wishes (Khajali et al, 2023).Many adults with CHD have been functionally limited since early childhood, and often have multiple clinical sequelae (cyanosis, ventricular dysfunction, pulmonary hypertension, lung disease, arrhythmia) that influence their quality of life.
HRQoL assessment in this patient population, as in other long-standing conditions, should therefore be tailored to the underlying physical condition to be relevant and appropriate to their needs (Bowling, 2009). A recent multicentre study assessed the HRQoL of ACHD patients with heart failure using non-disease specific HRQoL questionnaires (Ly et al. 2023). This study stressed the importance of early assessment of HRQoL in this patient group. The study population had a mean age of 44.3 years, compared to the older age of acquired heart failure patients, highlighting the need for a HRQoL measurement tool tailored to younger patients with heart failure secondary to CHD. A tool capable of quantifying quality of life in ACHD-HF remains urgently needed (Bullinger and Quitmann, 2014).
An ACHD-specific HRQoL assessment tool and its clinical application will be designed help to identify patients in need of intensified support and therapy, avoiding hospitalisation in some cases and improving healthcare resource allocation. Through repeated application, it can also be used to monitor the efficacy and tailor interventions (Bowling, 2009).
The present study aims to develop and validate a specific HRQoL measure for ACHD in heart failure (ACHD-HF) patients, with a significant contribution from patients as well as members of the specialist, multi-disciplinary ACHD team.REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
24/YH/0278
Date of REC Opinion
18 Dec 2024
REC opinion
Further Information Favourable Opinion