OBJECTIVES: Patients with high cervical spinal cord injuries (SCI) have substantial care needs and may require a ventilator and tracheostomy to breathe. This health technology assessment (HTA) aimed to inform decision-making regarding the national provision of domiciliary ventilation for adults with SCI in Ireland.

METHODS: A representative expert advisory group was convened and a HTA was conducted in line with the EUnetHTA ‘HTA Core Model®’. Critical components of this HTA included: a scoping review of international guidance, a budget impact analysis (BIA), and examination of organisational, patient, social and ethical considerations.

RESULTS: High cervical SCI are rare in Ireland (3.6 cases per million in 2021), but can be catastrophic. The scoping review identified 17 relevant guidance documents. There is consistency across guidelines that 24/7 care, involving at least one trained homecare staff who has demonstrated competency for the tasks required, is essential. However, there is a lack of consensus on the requirement for nursing qualifications.

In Ireland, while these patients typically do achieve discharge to their home, there are often substantial delays, the process is ad hoc, and there are geographical differences in the availability and quality of service provision. Fragmentation of funding also presents challenges. There is uncertainty about roles and responsibilities in the community, and there is a substantial burden placed on families. Given the intensity of care and equipment requirements, the BIA estimated that provision of homecare for each patient costs approximately €3.4 million over five years. There are also important ethical considerations (e.g. benefit-harm balance, autonomy, equity and justice).

CONCLUSIONS: The results of this assessment support the development of a national clinical pathway for this patient cohort that extends into the community. This pathway should have an overarching clinical governance framework, and would benefit from a national training and support role, and to be funded through a centralised budget.