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

Area of Science:

• Cardiology
• Patient-Reported Outcomes
• Medical Device Research

Background:

• Left ventricular assist device (LVAD) implantation significantly impacts patient quality of life.
• Existing patient-reported outcome measures (PROMs) do not fully capture LVAD recipients' unique post-implant experiences.
• Patient partner input is essential for developing relevant outcome measures.

Purpose of the Study:

• To identify and capture the key experiences and concerns of LVAD recipients.
• To develop a conceptual map of essential domains and items for LVAD-focused PROMs.

Main Methods:

• Group concept mapping (GCM), a mixed-methods approach, was used remotely with 18 LVAD recipients.
• The study involved three stages: item generation, item sorting, and rating of importance, relevance, and frequency.
• Patient partners were integral throughout the study design and development process.

Main Results:

• 101 statements generated, resulting in 9 distinct clusters of recipient experiences.
• Key themes included: Activities, Partner/family support, Travel, Mental wellbeing, Equipment/clothing, Physical/cognitive limitations, LVAD Restrictions, LVAD Challenges, and LVAD Positives.
• LVAD Positives received the highest ratings for frequency, relevance, and importance, followed by physical/cognitive limitations and LVAD restrictions.

Conclusions:

• Web-based GCM effectively engaged geographically dispersed LVAD recipients.
• The developed conceptual framework highlights critical domains for future PROMs, research, and clinical practice.
• Prioritizing these domains will enhance the evolution of LVAD design and patient care.