Assessing Quality of Life and Mortality in Adults With Intellectual Disability and Complex Health Problems Following Move From a Long-Stay Hospital

Abstract

In response to national policy directives, all residents of long-stay hospitals for adults with an intellectual disability (ID) in England are now living in the community. The success of community integration can be assessed by measures of relevant factors, such as quality of life and mortality, in those adults who move out of hospital and into community settings. The authors used the Questionnaire on Quality of Life to measure quality of life at baseline (i.e., 6 months prior to moving) and at 6 months and 1 year postrelocation in 51 adults with ID with complex health problems who had moved from a long-stay hospital into various community supported living accommodations, group residential homes, or nursing homes. Mortality and causes of death were investigated in those who died within 2 years of relocation. Overall, it was found that quality of life (in all domains investigated) improved between baseline and 6 months follow-up but leveled off at 1 year follow-up. Three adults died during the first 2 years of moving to the community; all had complex problems (two died from complications associated with seizures). The findings suggest the need for careful and considered planning when relocating people with ID who have complex health problems irrespective of their current residence. They also suggest that adults with ID and epilepsy may be particularly vulnerable to the move process and require particular attention.