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

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.

Using Topic Modeling to Understand Patients’ and Caregivers’ Perspectives About Left Ventricular Assist Device: Thematic Analysis

“…LVAD-Related Equipment and Clothing Needs: Similar to this study, one of the topics identified in the MyLVAD.com users by Naik et al, (2017) was "Carrying, wearing and handling LVAD" [5]. Also, similar to the present study, this outcome encompassed various topics such as equipment and batteries, dressings and drivelines, and the challenges of finding appropriate clothing to wear with the LVAD equipment, as found among 18 LVAD recipients from a national heart transplant center in the UK [12]. However, the current research goes beyond only identifying the significance of clothing and equipment for LVAD patients, as noted in such prior studies.…”

“…The study achieved this by integrating a nuanced exploration of online forum discussions with innovative analytical methods. In addition to this new approach, the study also enriched the body of knowledge on LVAD-related patient concerns and needs for support in several key areas: [12]. The current study expands on this by exploring a larger and more diverse dataset from the MyLVAD.com forum, offering a broader perspective on how familial support is perceived and discussed among a wider community of LVAD patients and caregivers.…”

“…among the worries expressed by patients and their caregivers. Similarly, Slade et al (2022) also identified LVAD challenges as a cluster, which included patients' concerns about equipment during shopping and the risk of getting the equipment wet[12]. While previous research has touched upon power as a concern for LVAD patients, the current study provides a more detailed exploration of subthemes within the power category.…”