Background There is a need to improve knowledge of the health-related quality of life (HRQoL) in the post-heart transplantation (HTx) period and the factors affecting it. This qualitative study aimed to identify the most important domains of HRQoL for heart transplant recipients and the factors that impact it.

Methods This was a qualitative study across 5 geographically diverse large HTx centers in France from July 2022 to January 2023. We gathered a purposive sample of individuals who had undergone HTx. A face-to-face semi-structured interview guide was used for individual interviews. All interviews were audio-recorded and transcribed verbatim.

Results A total of 14 individuals (10 men) were interviewed. The data analysis led to the development of 8 main themes (with sub-themes) that were relevant to participants: HRQoL perception (mental health, physical capacity, symptoms and comorbidities), participants’ experience during the HTx process, immunosuppressive treatments, relationship with the healthcare team, external and internal resources, socio-economic aspects and feelings about the donor. Recipients, spontaneously made connections between these themes.

Conclusions Heart transplant recipients had diverse perceptions of their HRQoL in the post-HTx period. The rich variety of themes identified from the review highlights that recipients have a complex HRQoL profile which is not currently captured by standard HRQoL tools that are commonly employed. These aspects should be taken into account in the clinical follow-up and in the selection of the most appropriate Patient Reported Outcome Measures (PROMs).

The authors have declared no competing interest.

This project was funded by the Agence de la Biomedecine, the competent authority for organ transplantation in France.

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

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The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

In accordance with French law, research studies based on the national organ registry (CRISTAL), managed by the Agence de la Biomedecine, are considered part of transplant assessment and do not require additional Institutional Review Board approval. The database has been registered with the French National Commission on Computing and Liberties (CNIL). Furthermore, all participants provided written informed consent before the study.

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