Development of a patient access portal for children undertaking rehabilitation: A design and feasibility study

Globally, there are 162.3 million prevalent cases of children under 15 needing rehabilitation (Cieza et al., 2020), demonstrating the vast need for advancement in this field. When a child faces challenges requiring rehabilitative care, it becomes crucial to prioritise every possible measure to enhance their quality of life and offer the best possible support and resources to navigate through the change in circumstances.

The development of a patient centred portal fills a significant gap in the realm of paediatric rehabilitation, addressing this essential part of care for young patients.

This project aims to investigate the feasibility of building a Patient Access Portal for paediatric patients undergoing rehabilitation, allowing them to access their treatment plans and progress data in an accessible and engaging manner. This study will involve conducting 1:1 interviews and focus groups with paediatric rehabilitation patients to establish their views on portal features, ensuring that the platform is co-designed with service users from its conception, to guarantee optimal usability and practicality of the portal for the end user.

The project will produce early-stage designs to be tested by the patient group before construction. These designs will feature comprehensive care information, developmental resources, and child-oriented gamification elements. This will contribute towards familiarising patients with their care, encouraging developed understanding of their rehabilitation and motivation towards improvement in goals.

A prior PPI study in adult rehabilitation patients (Trayner et al., 2023) highlighted the need for comprehensive information through a patient access portal to create clarity surrounding treatment. Participants wanted to be positive partners in their care, but were hindered by insufficient infrastructure, making comments such as _"I don't always know what I'm doing or why"_.

The desire for active participation is echoed by paediatric rehabilitative patients such as A, a 14-year-old patient of CNS. with cerebral palsy as a result of an acquired brain injury sustained at birth and likely to require rehabilitation for the rest of his life. A demonstrates the value of providing young people with agency and involvement in managing their treatment, being provided with read-only access Goal Manager, to track and monitor his progress and understand why interventions were happening.

He is more engaged and compliant with his treatment regime as a result. Earlier studies involving NHS neurorehabilitation staff (Trayner et al., 2023 \[2\]) also produced favourable views on the patient access portal concept. Participants reacted positively to initial prototypes for clinical use.