Researchers from the SABIEN-ITACA, the Universitat de València (UV), and the Virgen de la Arrixaca University Hospital in Murcia have published an article that highlight certain deficiencies in the care pathways for both paediatric and adult palliative care patients.

The study, which underscores the urgent need to review healthcare protocols and information systems, was published in the scientific journal Palliative and Supportive Care.

The research forms part of the PalliaHelp project, coordinated by Polibienestar-UV with the leadership of Francisco Ródenas Rigla. The project has been funded by the Spanish State Programmes for the Generation of Knowledge and Scientific and Technological Strengthening of the R&D+i System, and for R&D+i programmes oriented to societal challenges, within the framework of the 2017–2020 State Plan for Scientific and Technical Research and Innovation, under the Ministry of Science and Innovation.

In the study, the researchers carried out a retrospective review using process mining techniques on anonymised medical records of 85 adult patients (2,696 episodes) and 57 paediatric patients (1,912 episodes) from the Virgen de la Arrixaca University Hospital, covering the period between 2001 and 2021.

Using the PMApp tool — developed by researchers from ITACA-UPV — the team from Valencia and Murcia mapped actual care flows, identifying bottlenecks, referral delays, and variability in service provision.

‘Despite the limitations of a single case study, the results open new research areas to improve the quality and efficiency of the public health system, promoting more consistent, efficient and patient-centred clinical decision-making,’ says Zoe Valero, a researcher with the SABIEN-ITACA group at the Polytechnic University of Valencia.

Frequent delays in referrals to home care

The study reveals significant differences between the care pathways of adult and paediatric patients. For adult patients, it concludes that there is a high dependency on emergency services and frequent delays in referrals to home care or specialist units, compromising comprehensive patient care.

In the case of the paediatric population, the study shows a high degree of variability in care pathways, attributed both to the clinical complexity of the conditions and to the lack of standardisation in data collection.

In both groups, the research team found that current theoretical models do not accurately reflect clinical practice, making it difficult to optimise resources and to plan strategically within hospital settings.

Proposals for improvement

Based on their results, the team from the UPV, UV and the Virgen de la Arrixaca Hospital put forward several proposals to improve the quality of care for patients in palliative care: they propose a review and update of the theoretical models of palliative care so that they more accurately reflect the clinical reality in both paediatrics and adults; it recommends standardising clinical data collection formats, with structures that allow for automated and scalable analysis; and it suggests implementing continuous analysis systems based on process mining, which allow for the detection of deviations, improve care coordination and ensure more efficient, equitable and patient-centred care.

Reference

Ruiz-Gil T, Ródenas-Rigla F, Valero-Ramon Z, Rodríguez Rabadán MD. Mapping of care pathways in pediatric and adult palliative care in Spain: A case study. Palliative and Supportive Care. 2025;23:e107. doi:10.1017/S1478951525000513