Authors (including presenting author) :
Tsui CK(1), Tsang YP(2), Leung SY(1), Kwok KL(1), Chan Eric(1), Hou Andy(1), Yeung Gerry(1), Mak MK(1)
Affiliation :
(1) Department of Paediatrics, Kwong Wah Hospital, (2) Paediatric & Adolescent Medical Department, United Christian Hospital
Introduction :
The use of home non-invasive ventilation (NIV) in children has significantly increased in recent years. However, information on longitudinal trends in the number of children, the profile of the NIV children and their outcome is limited in Chinese children.
Objectives :
To identify the number, categories and outcome of children receiving long-term home NIV and provide guidance to future service improvement in domiciliary NIV use in Chinese children.
Methodology :
We performed a retrospective cohort study of children using long-term NIV at home (>3 months) in our department between 1 January 1997 and 31 December 2017. Exclusion criteria included premature infants (< 37 weeks) and age at start NIV >18 years. Outcome measures included patient characteristics and NIV parameters and adherence.
Result & Outcome :
One hundred twenty children (74.2% male) who had more than 3 months NIV during the 21-year study period. Median (IQR) age at initiation of long-term NIV was 11.8 (6.8 to 14.8) years. The principal diagnostic categories leading to requirement for long-term NIV were OSAS (70%) neuromuscular disorders (16%). The remaining 14% patients had a range of conditions including syndromal diseases, congenital upper and lower airway obstruction and parenchymal lung diseases.
The incidence of long-term NIV increase significantly across the three 7-year epochs (p=0.002, Kruskal-Wallis test), with a median 1 (1 to 2) patients in 1997 to 2003, 2 (1 to 2) in 2004 to 2010, 15 (3 to 20) in 2011 to 2017. The median duration in TDC services 1.9 (1.0 to 3.7) years. 56% received CPAP, 39% received BiPAP, and 5.0% received high-flow nasal cannula (HFNC) therapy.
CPAP adherence increased significantly (p=0.012, Wilcoxon signed ranks test) with a median from baseline 64.0% (39.0% to 90.3%) to last follow-up 74.9% (53.7% to 97.9%). Of the 120 children commenced on long-term NIV during 21-year study period, 56 (47%) remained in our technology dependent children (TDC) services. Two children had died while in our TDC services as a result of progression of their underlying disease process (1 x pulmonary fibrosis and 1 x Nemaline myopathy), 22 (18%) had discounted NIV support and 32 (27%) transitioned to adult services, 4 (3%) transitioned to other hospitals, 3 (2%) lost to follow-up, 1(1%) moved abroad. 21-year survival rate was 98.3%.
The paediatric long-term NIV population has expanded significantly over 21 years. Future planning of paediatric hospital and community services, as well as adult services, must take into account the needs of this growing population.
