Current status of long term ventilation of children in the United Kingdom: questionnaire survey

Abstract

Objectives To identify the number and current location of children, aged 0 to 16 years, requiring long term ventilation in the United Kingdom, and to establish their underlying diagnoses and ventilatory needs. Design Postal questionnaires sent to consultant respiratory paediatricians and all lead clinicians of intensive care and special care baby units in the United Kingdom. Subjects All children in the United Kingdom who, when medically stable, continue to need a mechanical aid for breathing. Results 141 children requiring long term ventilation were identified from the initial questionnaire. Detailed information was then obtained on 136 children from 30 units. Thirty three children (24%) required continuous positive pressure ventilation by tracheostomy over 24 hours, and 103 received ventilation when asleep by a non-invasive mask (n = 62; 46%), tracheostomy (n = 32; 24%), or negative pressure ventilation (n = 9; 7%). Underlying conditions included neuromuscular disease (n = 62; 46%), congenital central hypoventilation syndrome (n = 18; 13%), spinal injury (n = 16; 12%), craniofacial syndromes (n = 9; 7%), bronchopulmonary dysplasia (n = 6; 4%), and others (n = 25; 18%). 93 children were cared for at home. 43 children remained in hospital because of home circumstances, inadequate funding, or lack of provision of home carers. 96 children were of school age and 43 were attending mainstream school. Conclusions A significant increase in the number of children requiring long term ventilation in the United Kingdom has occurred over the past decade. Contributing factors include improved technology, developments in paediatric non-invasive ventilatory support, and a change in attitude towards home care. Successful discharge home and return to school is occurring even for severely disabled patients. Funding and home carers are common obstacles to discharge.

Home Ventilation for Children with Chronic Respiratory Failure in Istanbul

“…A recent review of UK children requiring long-term respiratory support at home showed that 56% of the surveyed population used mask ventilation [9]. The range of conditions that has benefited from this form of noninvasive support continues to grow throughout the pediatric age group [20,21,22,23].…”

“…Advantages of home mechanical ventilation (HMV) include decreased hospital-acquired infections, improved nutritional status, physical and physiological function and quality of life, resumption of more normal interactions and routines of daily life and lower health care costs [3,4,5,6]. The cumulative number of children who were started on HMV has increased tremendously in Europe and North America but little is known about HMV use and outcomes in children in developing countries [7,8,9,10,11]. Although Istanbul is quite a modern city, there are obstacles in starting HMV in children such as a lack of insurance support for home nursing and home visits of respiratory therapists.…”

Assistência ventilatória domiciliar em crianças: descrição de um programa

“…Comparando-se a casuística do programa por nós avaliado com estudo realizado na Inglaterra na última década, que analisa a evolução das crianças em assistência ventilatória domiciliar, observam-se muitas semelhanças 8 . No estudo inglês, assim como no programa de assistência ventilatória domiciliar do Dr. von Haunersches Kinderklinik, a maioria das crianças com insuficiência respiratória crônica apresentava doenças neuromusculares (55,9%), seguida pela síndrome de hipoventilação central congênita (14,0%).…”

Outcomes of Children With Severe Bronchopulmonary Dysplasia Who Were Ventilator Dependent at Home

“…35,36 Although no other studies have addressed the rehospitalization rates for children with tracheostomy, before and after decannulation, several have found that children who are ventilator dependent at home have a higher risk of rehospitalization than other children. 11,12,[36][37][38][39] The decrease in readmission rate after decannulation may be secondary to removal of the tracheostomy, improvement in BPD, or both.…”