Long‐term ventilator‐assisted children in Japan: A national survey

Abstract

Owing to improved technology and care for patients who need mechanical ventilation, the quality of life as well as the prognosis for long‐term ventilator‐assisted patients has improved significantly in recent years. However, the increased number of these patients has raised economic, ethical and medical problems. In order to assess the magnitude of these problems, we conducted the first nationwide survey on the status of long‐term ventilator‐assisted children in Japan. Questionnaires were mailed to 2524 pediatric departments at hospitals in Japan with more than 100 beds. At the time of the survey, 282 hospitals had 567 patients who had been ventilated for more than a month. Among these patients, 434 were younger than 20 years and had been ventilated for more than 3 months. The most common basic disorders were: various myopathies (n = 65), hypoxicischemic encephalopathy (n = 60), spinal muscular atrophy type 1 (Werdnig‐Hoffmann disease, n = 55), chronic lung disorders of prematurity (n = 21), Ondine's curse (n = 22), drowning (n = 17) and congenital heart diseases (n = 16). Of these 434 patients, only 61 were ventilated at home. Although home care was considered suitable for chronic ventilator patients by many pediatricians who responded to the survey, its realization has been hampered by the lack of a system and regulations to support it. The fact that many pediatricians in Japan have actively prolonged the life of Werdnig‐Hoffmann patients, from whom aggressive life saving measures have been withheld in most Western countries, has raised ethical as well as medical issues.

Paediatric home ventilatory support: Changing milieu, proactive solutions

“…Authors from several countries have described their experience with home‐based ventilation programmes for children . In Australia and New Zealand, guidelines for home ventilation in children were recently published, adding to those published in the United Kingdom (1998) and in the USA (1990) .…”

Sending children home on tracheostomy dependent ventilation: pitfalls and outcomes

“…11 Despite this there is limited information specifically on children at home on ventilation via a tracheostomy and their long term outcomes. The largest prospective study from France reported on outcomes of a heterogeneous group of children, and only 16 of the 158 on mechanical ventilation were supported via tracheostomy.…”

Long‐term ventilator support in patients with Werdnig–Hoffmann disease

“…A nationwide survey on the status of long‐term ventilator‐assisted patients in Japan has revealed that 55 patients with WHD received long‐term ventilator support in Japan. 5 This is quite contrary to the situation in some European countries, for example, in Italy where few patients with WHD are given mechanical ventilation. 6 …”