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Development of a quality of life measure for left ventricular assist device recipients using a mixed methods approach

Title: Development of a quality of life measure for left ventricular assist device recipients using a mixed methods approach
Authors: Anita L. Slade; Christel McMullan; M. Sayeed Haque; Stephen Griffith; Laura Marley; David Quinn; Margaret E. O'Hara; Mike Horton; Melanie J. Calvert; Hoong Sern Lim; Deirdre A. Lane
Source: ESC Heart Failure, Vol 11, Iss 5, Pp 3167-3179 (2024)
Publisher Information: Wiley, 2024.
Publication Year: 2024
Collection: LCC:Diseases of the circulatory (Cardiovascular) system
Subject Terms: health‐related quality of life; heart failure; left ventricular assist device; patient‐reported outcomes; Rasch analysis; Diseases of the circulatory (Cardiovascular) system; RC666-701
Description: Abstract Background Left ventricular assist device (LVAD) recipients report symptom improvement but find adjusting to life with the LVAD challenging. These challenges are unique, and existing patient‐reported outcome measures (PROMs) do not reflect their experiences. This study aimed to develop a culturally relevant quality of life PROM for use with LVAD recipients in future research, design evolutions and clinical practice. Methods A three‐stage mixed‐methods approach was used to develop a PROM: stage 1 included group concept mapping (GCM); stage 2 semi‐structured qualitative interviews were conducted with 11 LVAD recipients and 10 clinicians, and a questionnaire was developed using a conceptual framework; and stage 3 used exploratory psychometric analysis of the PROM data using Rasch measurement theory. This paper presents stages 2 and 3. Results The conceptual framework consisted of four key concepts, including general health, life with the LVAD, equipment and clothing and emotional impact. Statements from interviews and GCM were used to create items for the LVAD quality of life (LVAD‐QoL). Cognitive interviews tested face validity and participant comprehension. Forty‐nine participants were recruited from three UK transplant centres. PROM data were collected and analysed using Rasch analysis. Four items displayed misfit; dependency between item sets was the biggest issue (57/485 pairwise differences). After restructuring and dealing with item misfit, the LVAD‐QoL conformed to the Rasch model, supporting the psychometric properties and quality of the LVAD‐QoL. Conclusions Using a mixed‐methods approach ensured the development of a robust and psychometrically sound tool for research, design evolution and clinical practice with LVAD recipients.
Document Type: article
File Description: electronic resource
Language: English
ISSN: 2055-5822
Relation: https://doaj.org/toc/2055-5822
DOI: 10.1002/ehf2.14850
Access URL: https://doaj.org/article/8d4b7ff76d7943dba8ccca5584c7d8fa
Accession Number: edsdoj.8d4b7ff76d7943dba8ccca5584c7d8fa
Database: Directory of Open Access Journals