Conceptual and psychometric characteristics of instruments used in ACHD quality of life research: A scoping review

Latham, RS, Seaton, SE, Smith, LK, Nyakila, C, Rowe, M and Lotto, RR ORCID: 0000-0002-4305-0513 Conceptual and psychometric characteristics of instruments used in ACHD quality of life research: A scoping review. Cardiology in the Young. ISSN 1047-9511 (Accepted)

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Abstract

Advances in diagnosis, surgery, and long-term management have increased survival among people with congenital heart disease (CHD), resulting in a growing population of adults with congenital heart disease (ACHD). As priorities have shifted from survival alone towards long-term outcomes, quality of life (QoL) has become an increasingly important focus of ACHD research. However, QoL is often used interchangeably with related constructs such as health-related quality of life (HRQoL) and health and functional status. This scoping review aimed to identify instruments used in studies reporting QoL outcomes in adults with moderate and severe ACHD and to summarise reported evidence relating to their validity, reliability, and suitability for use in this population. Published quantitative and mixed-methods studies from high-income countries were included if they reported the use of a patient-reported instrument described as measuring QoL or a related construct. Sixty-six records published between 2015 and 2026 were included, from which sixteen instruments were identified. Although records were identified through searches relating to QoL, only five instruments were classified as measures of overall QoL. The remaining instruments measured health and functional status, HRQoL, or disease-specific aspects of living with ACHD. These findings suggest that conceptual ambiguity between QoL and related constructs remains evident within contemporary ACHD research. Greater conceptual clarity may improve the consistency, comparability, and interpretation of patient-reported outcomes in individuals living with ACHD.

Item Type:	Article
Uncontrolled Keywords:	1102 Cardiorespiratory Medicine and Haematology; Cardiovascular System & Hematology; 3201 Cardiovascular medicine and haematology
Subjects:	R Medicine > R Medicine (General) R Medicine > RT Nursing
Divisions:	Nursing and Advanced Practice (closed Aug 26)
Publisher:	Cambridge University Press
Date of acceptance:	11 October 2026
Date Deposited:	19 Oct 2026 10:23
Last Modified:	19 Oct 2026 10:23
URI:	https://researchonline.ljmu.ac.uk/id/eprint/29664

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