title: Increasing prevalence of domiciliary ventilation: changes in service demand and provision in the South West of the UK.
abstract: We examine the incidence and prevalence of domiciliary ventilation in the South West region of the UK, assess trends over 15 years, and describe patient outcome. We conducted a retrospective review of all patients below 18 years receiving domiciliary ventilation in the South West region of the UK between January 1994 and August 2009. Children who received long-term ventilation solely in hospital were excluded from the study. Information was obtained from a locally held database, medical notes, and hospital administration systems. One hundred-six patients were identified. Prevalence has increased since 1994 from 0.2 to 6.7 per 100,000 children. The incidence of both invasive and non-invasive ventilations has increased with a trend towards more non-invasive therapy. The commonest underlying disorders were airway pathology (37 patients), neuromuscular disease (34 patients), and central congenital hypoventilation disorder (17 patients). Sixty-seven patients had significant co-morbidities. Of 38 non-current patients, 19 were transferred to adult ventilation services, 11 died, and 6 were successfully weaned from ventilatory support. In conclusion, there has been a 30-fold increase in the prevalence of paediatric domiciliary ventilation, in the South West region of the UK, since 1994. Co-morbidities are common. Very few children discontinue long-term ventilation, and increasing numbers of ventilated children are transferred to adult services.
authors.affiliation: Paediatric Intensive Care Unit, Bristol Royal Hospital for Children, Bristol, BS2 8BJ, UK. sarahgoodwin@nhs.net
authors.forename: Sarah
authors.initials: S
authors.lastname: Goodwin
authors.forename: Hayley
authors.initials: H
authors.lastname: Smith
authors.forename: Simon
authors.initials: S
authors.lastname: Langton Hewer
authors.forename: Peter
authors.initials: P
authors.lastname: Fleming
authors.forename: A John
authors.initials: AJ
authors.lastname: Henderson
authors.forename: Tom
authors.initials: T
authors.lastname: Hilliard
authors.forename: James
authors.initials: J
authors.lastname: Fraser
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D015897:Comorbidity; D004739:England / Q000453:epidemiology; D005260:Female; D006699:Home Care Services / Q000706:statistics & numerical data / Q000639:trends*; D006801:Humans; D007223:Infant; D008297:Male; D009468:Neuromuscular Diseases / Q000150:complications / Q000453:epidemiology; D012121:Respiration, Artificial / Q000379:methods / Q000706:statistics & numerical data / Q000639:trends*; D012140:Respiratory Tract Diseases / Q000150:complications / Q000453:epidemiology / Q000628:therapy*; D012189:Retrospective Studies; D015300:Ventilator Weaning / Q000706:statistics & numerical data