Damage to the spinal cord can be life-threatening or result in life-changing injuries, with the potential for long-term disability in survivors. The higher up the spinal cord the lesion occurs, the more extensive the range of impairments will generally be. While rare, patients with complete C1-C3 level cervical lesions will experience the most severe level of impairment and tend to require a ventilator and a tracheostomy to breathe.

Domiciliary (at-home) ventilation is considered the standard of care for ventilator-dependent individuals with spinal cord injuries where clinically appropriate. While it is already standard practice in Ireland to discharge these patients home as soon as it is safe to do so, there are substantial barriers to the provision of homecare services for these patients. As a result of these barriers, some of these patients might have to remain hospitalised for a prolonged period of time, often several years, before being discharged home, which has substantial implications for patient and family quality of life and for health service provision. 

This research was carried out in accordance with HIQA’s guidelines for the conduct of HTA. In summary:

• The terms of reference of the HTA were agreed between HIQA and the HSE’s National Clinical Programme for Rehabilitation Medicine and the NRH’s Spinal Cord System of Care Programme.
• An Expert Advisory Group was convened comprising representation from key stakeholders including the HSE, clinicians with specialist expertise in the management of patients with spinal cord injuries requiring mechanical ventilation, those involved in funding community services, and a patient and family carer group.
• A protocol for the work to be undertaken was reviewed by the HIQA Expert Advisory Group, and published on the HIQA website.
• The epidemiology of high cervical spinal cord injuries in Ireland, and the associated burden of disease, were described.
• The technology (that is, the comprehensive care) required for a patient receiving domiciliary invasive ventilation and its associated outcomes (clinical, safety, economic) were described.
• A scoping review was carried out to summarise international practice and standards relating to the provision of domiciliary invasive ventilation for this population.
• The budget impact of providing mechanical invasive ventilation for this population at home, compared with in hospital settings, from the perspective of the publicly funded health and social care system (that is, the HSE), was examined. 
• The potential organisational and resource implications associated with providing domiciliary invasive ventilation for this population were examined.
• Analyses of the potential patient, social and ethical implications associated with providing domiciliary invasive ventilation for this population were undertaken.
• The draft report was reviewed by the Expert Advisory Group. A final draft report was submitted to the Board of HIQA for approval. Following its approval, the completed assessment was submitted to the Minister for Health and the HSE as advice.

• Some patients with complete C1-C3 level cervical lesions have a lifelong requirement for mechanical invasive ventilation. It is estimated that up to two new patients with spinal cord injuries (SCI) may require permanent ventilation in Ireland each year, though in some years there are no new patients. Internationally, domiciliary (at-home) ventilation is considered the standard of care for ventilator-dependent patients with SCI where clinically appropriate.
• While it is currently standard practice in Ireland to provide domiciliary ventilation for these patients, there is no formalised approach for discharge and ongoing care in the community. This, combined with the fragmented funding system involving multiple budget holders, results in delayed discharges, which has substantial implications for patient and family quality of life and for health service provision.
• An international review found that while standards and practice vary with respect to the qualification of staff providing care, common features of a domiciliary ventilation service include:
  • a system of governance with clear roles and responsibilities
  • clinical guidance in relation to the management of patients’ complex healthcare needs
  • defined processes for discharge, communication and ongoing monitoring
  • dedicated funding for the required equipment and staffing 
  • a requirement for 24/7 care by trained homecare staff who have demonstrated competency for the tasks required
  • education and training programmes for patients, families and homecare staff
  • processes for managing ethical and safeguarding issues, including advanced care planning.
• With respect to costs:
  • The total budget impact for domiciliary ventilation care provision, per patient, is estimated at €3.4 million over five years. However, this could be as high as €4.8 million per patient depending on the number and grade of homecare staff involved. It is unclear whether care at home would cost more or less than hospital care for these patients; however, domiciliary ventilation may alleviate some of the challenges currently experienced by patients and families, and would free up intensive care unit/high dependency unit bed capacity.
  • The total cost of establishing and implementing a new bespoke role in the community that would provide ongoing training and support to patients, families and homecare workers, is estimated at €0.45 million over a five-year period.
• With respect to any decision to developing a national provision of service, consideration should be given to:
  • an overarching clinical governance framework that takes into account the substantial requirements for complex discharge planning and well-coordinated care that may involve multiple government departments, agencies and clinical programmes
  • development of a national clinical pathway for ventilator-dependent SCI patients that extends into the community, that includes specification of roles and responsibilities for service providers 
  • a centralised budget for provision of care
  • a national training and support role to support the delivery of a safe, effective and quality assured service, and to improve the resilience and continuity of care
  • how ethical aspects (for example, balance of benefits and harms for patients and families, best use of available resources) are managed in decision-making
  • exploring the barriers that currently exist to providing domiciliary ventilation in long term care facilities and how these might be addressed
  • a system for clinical monitoring, audit and evaluation to ensure safer, better care.