Where children die: A retrospective analysis of child death overview panel (CDOP) data

Where children die: A retrospective analysis of child death overview panel (CDOP) data

Hartley D; Renton K; Clarkson L; McKeating C; Lyles L; Mayer A

Archives of Disease in Childhood

2019

child; child death; female; human; major clinical study; male; palliative therapy; retrospective study; controlled study; hospice; terminal care; conference abstract; ethnic group; ethnicity; newborn; anonymised data; Asian; British citizen; cancer diagnosis; cause of death; chromosome aberration; congenital malformation; data analysis software; gender; mortality rate; strategic planning

Aims There is a statutory requirement to review all child deaths in England. The aim of this study is to collate and evaluate child death data from all Child Death Overview Panels (CDOPs) within a single UK region to inform strategic planning. Methods A retrospective analysis of 3 full years of anonymised data (2013/14 - 2015/16) representing all child deaths (expected and unexpected) collated from all 14 CDOPs in the region. Descriptive analysis was performed using SPSS assessing age (0-17 inclusive), gender, ethnicity, partial postcode, place of death and category of death as assigned following CDOP review. Ethical approval was not required. Missing data was excluded from analysis on a pairwise basis. Results Over the study period there were 1221 deaths, with an average mortality rate of 407 deaths per annum (total child population=1.1 million, 3.5 deaths/10000 children). The major causes of death were perinatal/neonatal events, and chromosomal, genetic and congenital anomalies; Combined these account for 60% (n=712/1183) of the dataset. 'Expected' deaths accounted for 64% (n=730/1149) of all child deaths. Place of death for expected deaths=Hospital deaths: 77% (n=564) Home: 9% (n=67), Hospice: 13% (n=91). When ethnicity data analysed for place of death (excluding neonatal and unexpected deaths), a greater proportion of white British children (n=201) died at home (16%, n=33) or within a hospice (23%, n=47) when compared to Asian children (Home: 12%, n=14; Hospice: 9%, n=10); Chi-squared 15.07, p=0.002. Conclusions Place of Death (PoD), a key quality indicator for end-of-life care, remains within hospital for the majority of children. Both ethnicity and disease type affect PoD, with ethnic minority groups less likely to die at home or hospice. Children with a cancer diagnosis were more likely to die at home, possibly attributable to known availability of a 24 hour/ 7 day outreach care for this group. Local paediatric palliative care services can use the above information to ensure future service developments provide equitable care provision and choices for families. Data limitations include acknowledged individual CDOP panel variations in data collation, including categorisation of cause of death and absence of recording of preferred PoD.

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August 2019 List