Predictive Factors of Early Mortality in Children With Developmental Disabilities: A Case-Comparison Analysis

Abstract

The aim of this study was to identify the risk factors for early mortality in children with neurodevelopmental disabilities. Of 1000 children who were sequentially referred to the same child developmental center over the period 1975-1985, 81 children died between the ages of 6 months and 22 years (mean, 8.04 years; 6.1 SD). A group of 81 age-matched children and another group of 81 developmentally and age-matched children also referred to the center served as comparison groups. Following multivariate analysis, low developmental quotient, restricted mobility, assisted feeding, and genetic etiology were risk factors for early mortality when compared to the age-matched group (P < .01). In comparison to the developmentally matched group, restricted mobility, genetic etiology, and hearing deficit were identified as significant risk factors (P < .01). Comprehensive treatment at the child development center was demonstrated to be a significant protective factor (P = .004). Socioeconomic variables were not significant in predicting an increased mortality risk in disabled individuals. In conclusion, in addition to mobility and feeding skills, a genetic etiology and hearing deficit are risk factors for early mortality, whereas socioeconomic variables are not. A comprehensive treatment program was found to be a protective factor.

Impaired mobility associated with an increased likelihood of death in children: A systematic review

“…Seven papers were reported as retrospective cohort studies (Baird et al, 2011;Touyama et al, 2013;Hemming et al, 2005;Strauss et al, 1998a;Evans et al, 1990;Nielsen et al, 2002;Strauss et al, 1998b), one as case control (Cohen et al, 2008) (with two comparison groups) and one retrospective study of prospectively collected data (initial recruitment for another study, reporting vital status at a later point) (Westbom et al, 2011). This study suggested the data were collected as part of a research project, the remaining studies used routinely collected clinical data.…”

“…Studies used existing datasets, with two using the Client Development Evaluation Report (CDER) (Strauss et al, 1998a;Strauss et al, 1998b), two using registers of cerebral palsy (Westbom et al, 2011;Nielsen et al, 2002) and the remaining five, using clinical records, were reported as retrospective cohort studies (Baird et al, 2011;Touyama et al, 2013;Hemming et al, 2005;Evans et al, 1990;Cohen et al, 2008). Sample sizes ranged from 277 to 12,719 but were not consistently reported.…”

“…Studies have reported the increased probability of death to be associated with immobility (Ashwal, 2005; Cohen et al, 2008), lack of feeding skills, genetic aetiology, hearing deficit (Cohen et al, 2008), intercurrent illnesses with three or more coexisting disabilities (Decouflé and Autry, 2002), functional disability (Hutton et al, 1994), inability to recognize voices or speak intelligible words and incontinence (Katz, 2003). More recently, the presence of ventilatory airway support, pain/distress associated with feeding and difficulty maintaining sitting position have been proposed as ‘vulnerability factors’ indicative of warranting palliative care (Harrop and Brombley, 2012) but the methods have not been reported in any detail.…”

Survival, Mortality, and Life Expectancy

“…Numerous studies from California have focused on feeding ability [17][18][19][20][21]. Studies from England have focused on combinations of self-feeding and dressing abilities [22][23][24][25][26][27], and one study from Israel accounted for independent/non-independent feeding ability [28]. The association of mortality risk with fine motor functioning is not nearly as strong as with gross motor functioning, and a number of studies have not addressed this factor at all.…”

“…As we have alluded to above, the issue of enteral nutrition (via gastrostomy or otherwise) deserves special attention, and a number of studies have addressed this to one degree or another [17][18][19][20][28][29][30][31][32]. Taken as a whole, these studies provide evidence of a strong association between placement of (and need for) a feeding tube with elevated mortality risk, all else being equal.…”