Adult outcome of childhood learning disability

Abstract

'But what are the prospects for the future, Doctor?' This question is frequently asked by parents of children with learning disability.* But longitudinal studies of the outcome in adulthood of childhood learning disability are lacking. 1 At the same time, extrapolating prognoses from the available evidence is unreliable. Increasingly, however, clinicians are faced with this basic question that is on the minds of parents who have gleaned 'information' from other sources, notably the internet. So, what can be usefully and reliably claimed regarding outcome in adulthood for children with learning disabilities?Outcome studies in learning disability Studies of the outcome of childhood learning disability have adopted a variety of strategies. Various outcome measures have been used including: (1) life expectancy, (2) general health, (3) adaptive functioning, (4) psychopathology, (5) service contact, and (6) integration into adult life. Early studies focused mainly on morbidity and mortality (e.g. Decker and colleagues, 2 Richards and Sylvester 3 ), while more recently the emphasis has shifted towards systematic consideration of quality of life . 15,18 Life expectancy There is a long tradition of research on the mortality of people with learning disability. A variety of studies (e.g. Richards and Sylvester, 3 Balkrishnan and Wolff 4 ) have demonstrated that, in general, children with learning disability have a shorter life expectancy than other children. Previously, most of these studies were carried out on long-stay hospital patients employing case note data, but the same outcome has been found in the recent community-based study by Hollins and colleagues, 5 that examined death certification data of individuals with learning disability. These studies have clarified that mortality increases with increasing severity of learning disability, most notably among those with IQ levels below 40. [5][6][7] Other high risk factors which predict or are associated with earlier death in people with learning disability include any additional physical disability or medical problem, notably cerebral palsy and poorly controlled epilepsy. Non-mobile children and those incapable of self-feeding are especially at risk of short life expectancy. 6 Another strategy has been to concentrate on the cause of death among people with learning disability. In a major 50-year study Carter and Jancar 8 found that before 1955, tuberculosis was a common cause of death among people with learning disability while other respiratory infections were implicated more commonly in later deaths. Between 1930 and 1980, death rates by arterial disease increased while death from status epilepticus decreased. They also found that from 1959 to 1968, cancer became a more common cause of death among people with learning disability. These three latter trends mirror changes in lifestyle and improvements in medical treatment of people with learning disability over the last 50 years. Subsequently, Dupont and coworkers 9 applied the concept of 'avoidable mortality' to learni...