Paediatric patient experience during hospitalisation stays: Developing paediatric PREMS questionnaires through a collaborative Delphi study

Children and adolescents may experience vulnerability when accessing healthcare services. Despite patient-centered care is a core principle of healthcare, a notable gap remains in systematically integrating their perspectives into healthcare management. Part of the VoiCES European project, this study explored the construct of paediatric patient experience, and participatorily developed a standardised set of tools for collecting children and adolescents' feedback, with a particular focus on experiences during hospitalisation. A collaborative, consensus-building process engaged children, adolescents, families, experts, and healthcare professionals in several European countries. The study combined a Delphi study with in-depth interviews to paediatric patients across four European children's hospitals. Stakeholder involvement was pivotal in refining the dimensions, sub-domains, and questionnaire items of paediatric experience with hospital stay. Age-appropriate, multilingual questionnaires were developed for collecting Paediatric Patient Reported Experience Measures (Paediatric PREMs) from hospitalized children and their caregivers, separately. The tools cover various dimensions of the hospital experience according to respondent group. For children aged 8–14 years, visual elements were included to support comprehension and engagement. This study highlights the importance of tailoring participation and evaluation tools to different age groups. The Paediatric PREMs offer valuable resources for healthcare managers, providers, and patient experience experts seeking to incorporate young patients' perspectives into quality improvement and healthcare management processes. They also contribute to the development of a European Observatory on paediatric hospital experiences. • Reviews highlight low child involvement in paediatric healthcare service evaluation. • PREMs were co-developed via a multi-stakeholder participatory design. • Young people were involved via interviews and Delphi process reaching an expert consensus. • Cognitive testing improved wording and age-appropriate formats. • PREMs enable cross-country comparability in paediatric care.