Waiting is the hardest part: patient, caregiver and clinician perspectives on shaping prehabilitation support strategies in liver transplantation

Objective Exploring the unmet needs of patients awaiting liver transplantation remains largely unexplored and with no established multicomponent support mechanisms currently available, identifying these needs could provide better, tailored support. This study explores the experiences of patients, caregivers and clinicians, highlighting unmet needs and using these to inform support strategies during the pre-transplant period. Methods A qualitative study using focus groups. Participants: patients, caregivers and clinicians with experience of awaiting liver transplantation and/or receiving a transplantation. Focus groups were audio-recorded, transcribed on Microsoft Teams and verified by the lead author. The data were analysed using reflexive thematic analysis. Results A total of 52 participants were involved in the study: 23 patients, 10 caregivers and 19 clinicians, across 11 focus groups. Reflexive thematic analysis identified six overarching themes and 16 subthemes that impacted patients awaiting liver transplantation. Six themes included: (1) Sequelae of awaiting liver transplantation, (2) Current management strategies awaiting liver transplantation, (3) Perceived benefits of prehabilitation, (4) Essential considerations for targeted support, (5) Strategies to optimise engagement and (6) Opportunities and challenges of remote delivery. Conclusion This study highlights critical unmet needs among patients awaiting liver transplantation, emphasising the necessity for flexible, individualised and remotely delivered interventions that go beyond exercise support to include nutrition, psychological and peer support, financial and social resources and comprehensive education. Clinician endorsement and regular check-ins delivering behaviour change support may improve engagement, though variability in disease progression will continue to pose challenges.