Background The importance of patient and family experience as a core component of quality and service improvement is increasingly acknowledged and ensuring that patients have a positive experience of care is a priority for the NHS. Patient or parent-reported experience measures (PREMs) are frequently used to collect information about all aspects of health care but in a specialist setting PREMs need to be specific to the population if they are to be used as drivers of service development.

Methods Our aim was to investigate the experiences of parents of children on a ventricular assist device (VAD) at Great Ormond Street Hospital (GOSH) and to use these experiences, together with a review of the literature and expert clinical opinion, to inform the development of a PREM for the Paediatric VAD population. A topic guide was developed in conjunction with the clinical team and semi-structured interviews with parents were audio-recorded with consent and transcribed. Transcripts were thematically analysed to identify key themes.

Results Three parents of children who had recently been supported on a VAD were interviewed. Three key themes about experiences whilst on a VAD were identified: support, activity, and practical adjustment to life with a VAD in a hospital setting. Parents described many challenges, including transitioning from another hospital, making the decision to go on a VAD, learning new routines and tasks, living with fear and uncertainty and extended periods of separation from family members. These themes, together with the literature and clinician input, will now be used to develop tailored questions for the VAD PREM, before piloting it with current patients.

Conclusion Being on a VAD is challenging for parents and their children. Enabling parents to provide feedback, via a bespoke PREM, will inform service development, thereby improving the experiences and outcomes of VAD patients and their families.