Living with a left ventricular assist device: Capturing recipients experiences using group concept mapping software

Anita L Slade*, Margaret E O'Hara, David Quinn, Laura Marley, Stephen Griffith, Melanie Calvert, M Sayeed Haque, Hoong Sern Lim, Philippa Doherty, Deirdre A Lane

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Abstract

BACKGROUND: Left ventricular assist device (LVAD) implantation significantly impacts on a recipient's symptoms and quality of life. Capturing their experiences and post implant journey is an important part of clinical practice, research and device design evolution. Patient reported outcome measures (PROMs) are a useful tool for capturing that experience. However, patient reported outcome measures need to reflect recipients' experiences. Discussions with a patient partner group found that none of the frequently used cardiology PROMs captured their unique experiences.

AIMS: To capture the experiences and important issues for LVAD recipients. Develop a conceptual map of domains and items that should be reflected in patient reported outcomes.

METHODS: Group concept mapping (GCM) web-based software was used to remotely capture and structure recipients' experiences across a wide geographical area. GCM is a semi-quantitative mixed method consisting of 3 stages: item generation, item sorting and rating (importance, relevance and frequency). Patient partners were involved in all aspects of the study design and development.

RESULTS: 18 LVAD recipients consented to take part. 101 statements were generated and multi-dimensional scaling, and hierarchical cluster analysis identified 9 clusters. Cluster themes included: Activities, Partner/family support, Travel, Mental wellbeing, Equipment and clothing, Physical and cognitive limitations, LVAD Restrictions, LVAD Challenges and positive impact of the LVAD (LVAD Positives). LVAD Positives were scored highest across all the rating variables, e.g., frequency (2.85), relevance (2.44) and importance (2.21). Other domains rated high for importance included physical and cognitive limitations (2.19), LVAD restrictions (2.11), Partner/family support (2.02), and Equipment and clothing (2.01).

CONCLUSION: Online GCM software facilitated the inclusion of geographically dispersed recipients and provided useful insights into the experiences of LVAD recipients. The conceptual framework identifies important domains and items that should be prioritised and included in patient reported outcomes in future research, LVAD design evolution, and clinical practice.

Original languageEnglish
Article numbere0273108
Number of pages15
JournalPLoS ONE
Volume17
Issue number9
DOIs
Publication statusPublished - 21 Sept 2022

Bibliographical note

Funding Information:
This work was supported by funding from the British Heart Foundation (grant number PG/18/58/33944) awarded to ALS. This work was also supported by the NIHR, awarded to MC. (This paper presents independent research supported by the National Institute for Health and Care Research Birmingham Biomedical Research Centre at the University Hospitals Birmingham National Health Service Foundation Trust and the University of Birmingham).

Publisher Copyright:
© 2022 Slade et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Keywords

  • Heart Failure/surgery
  • Heart-Assist Devices
  • Humans
  • Patient Reported Outcome Measures
  • Quality of Life
  • Software
  • Treatment Outcome
  • Research and analysis methods
  • Earth sciences
  • Computer and information sciences
  • Medicine and health sciences
  • Engineering and technology
  • Biology and life sciences
  • Research Article

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