The Health Information and Quality Authority (HIQA) has started work on a health technology assessment (HTA) examining the transition of young people with severe neurological impairment (SNI) from paediatric to adult healthcare as well as the organisation of care for these individuals in the adult setting. The Department of Health requested this assessment to support evidence based decision making by the Minister for Health and the Health Service Executive (HSE).

SNI describes a group of conditions that arise in childhood and result in people living with the most severe forms of neurodisability. It results in cognitive and physical impairment and is often life limiting. People with SNI have complex care needs and require substantial support with activities of daily living. Advances in healthcare mean that more young adults with SNI are transitioning into adult services, creating a growing need for well coordinated adult services and appropriate expertise across the health system. The transition period can be challenging for many young adults with SNI and their families, with some losing contact with healthcare teams completely. This is an issue that affects many countries, not just Ireland.

The HTA will evaluate the clinical effectiveness of, and the organisational requirements of implementing, a transition of care model. It will also consider the organisation of adult healthcare services for individuals with SNI. As part of the project, the ethical and social implications for patients, caregivers, the wider public and the Irish healthcare system will be considered. HIQA is publishing the protocol for this assessment today, which outlines how it will explore these issues.

Commenting on the findings, HIQA’s Chief Scientist, Dr Conor Teljeur, said:

“The transition from child to adult services is a critical period for people with severe neurological impairment. These are young people in need of extensive healthcare support. The transition to adult services is challenging as their healthcare needs span multiple services and specialities. We will examine the current landscape to identify where barriers occur and how they can be addressed.”

The full assessment will be published in due course.