LAUSR

Transitioning the complex care of children with different chronic disorders to their home environment has gained significant interest over the past three decades. The high cost of prolonged hospital stay, both financially and socially on families, necessitated this transition. Children who need long-term ventilation support, both invasively via tracheostomy or non-invasively (NIV), are a major group that requires such care. In fact, for many disorders such as congenital central hypoventilation syndrome, this is the standard of care rather than the exception.1 The current evidence that these children have a better quality of life and development while being cared for at home supports this move towards home care.2,3 Studies from developed and developing countries demonstrated a significant increase in the number of children on long-term ventilation at home.4–7 In Oman, there is currently no published data on the number of children on long-term ventilation at home. However, unpublished data from a single tertiary center (Royal Hospital, Muscat), revealed that since the first child was sent home on invasive ventilation in 2009, there has been an increase in this practice with 13 children currently followed on invasive ventilation. Providing this care in Oman, like any other country, is surrounded by several ethical and practical challenges. Ethically, several questions need to be answered on a national level. First, who are the patients that will be supported at home? This decision is currently left to the treating team rather than based on specific clinical criteria, which could result in marked variability in patient care. The fear is that this option is given to inappropriate candidates who otherwise should receive palliative care and is not given to children who may have a meaningful benefit from home ventilation. Second, being in a culture where families rely on physicians to make passive decisions for them, how are we going to actively involve them in this major decision that will change their day-to-day life and social expectations? An example, to put this into perspective, is the change happening with what was considered a lethal neuromuscular disorder. Until recently, children with spinal muscular atrophy type 1 were managed palliatively in Oman like many parts of the world. However, with the recent advance in developing disease-modifying treatment,8 there is a move towards active treatment. Manually assisted cough and secretion management is almost always needed to provide ventilation support (mostly NIV) for these children when an active treatment pathway is undertaken.1 Such a decision has major implications on the health care systems and families. If we decided on a national level to move towards this practice then all aspects of the complex home care support for these children need to be addressed. Fragmented care will negatively impact the benefit of this expensive treatment. Soon, similar questions will come up for other disorders as well. From a clinical perspective, the challenges are equally complex. These children and their families require organized teamwork to coordinate a safe home transition, which is often a lengthy process ranging from 46 days to 9.6 months for invasive ventilation.9 Providing this level of care across the country (rather than only in Muscat), to ensure safety and health care equality, remains a challenge that requires specialized training. Also, depending on the complexity of child’s condition, these children need a long list of equipment including ventilators, suction machines, and monitoring devices and although the cost of this equipment is relatively high, it is far less editorial Oman Medical Journal [2019], Vol. 34, No. 5: 389-390