Predictors of mortality in children with severe mental retardation: the effect of placement.

Abstract

OBJECTIVES: This study was undertaken to assess the predictors of mortality in severely disabled children with mental retardation, and to compare risk-adjusted mortality rates for those living in institutions with rates for those living in the community. METHODS: Statistical analysis was performed on a set of 24,469 person-years, derived from a population of all children with severe mental retardation and a fragile medical condition who are registered with the California Department of Developmental Services. Variables included age, several measures of mobility, the presence or absence of tube feeding, the level of retardation, and certain adaptive skills. RESULTS: Reduced mobility and the use of tube feeding were associated with a large increase in mortality risk. Own home residence and community care facilities have an estimated 25% higher risk-adjusted odds on mortality than institutions and health facilities. CONCLUSIONS: The differential mortality in the placements points to a possible effect of quality of care. One consequence of the current trend toward deinstitutionalization may be an increased mortality rate in children with severe developmental disability.

Residential Characteristics, Social Factors, and Mortality Among Adults With Intellectual Disabilities: Transitions Out of Nursing Homes

“…Other studies focused on comparable mortality rates between community settings and institutions (Eyman, Grossman, Tarjan, & Miller, 1987). Some studies in California have indicated that community settings have higher mortality rates than institutions (Strauss, Eyman, & Grossman, 1996;Strauss & Kastner, 1996;Strauss et al, 1998aStrauss et al, , 1998b. On the other hand, Silverman, Zigman, and Silver (1992) found that movement of adults with profound intellectual disability and multiple disabilities from a service-intensive, skilled nursing facility (SNF) to small, community-based ICF/MRs did not increase mortality risk.…”

Translating policy principles into practice to improve health care access for adults with intellectual disabilities: A research review of the past decade

“…The importance of quality of life has been tied to outcomes following de-institutionalization. Strauss et al [1996] found that persons with IDD were at increased risk of death in community settings compared with institutions when level of…”

An extended Kaplan-Meier estimator and its applications

“…[49][50][51][52] suggested that initially one should partition the children into cohorts on the basis of two key variables. These were tube feeding (a dichotomy according to whether the child required gastrostomy feeding), and a four-point mobility scale (cannot lift head when lying on stomach/can lift head but not chest/can lift head and chest when lying on stomach but has limited ability to roll/has full rolling ability).…”