The functional and psychological status of patients with amyotrophic lateral sclerosis: Some implications for rehabilitation

Abstract

Amyotrophic lateral sclerosis (ALS), known as motor neurone disease (MND) in Britain, poses special problems in rehabilitation by virtue of its nature, trajectory and the age of patients with the disease. Many practical difficulties of ALS are well known, but there has been little research on the psychological parameters of the disease. This study of 181 ALS patients, from a national register in England and Wales, indicates that, contrary to some previous research, psychological distress (measured by the General Health Questionnaire) is widespread among patients at all stages of the disease. Severity of functional impairment is significantly related to psychological distress, but explains only a small part of the variance. Rehabilitation in relation to ALS must take account of the high incidence of psychological difficulties, as well as the considerable functional problems associated with the disease.

A review of psychosocial aspects of motor neurone disease

“…In agreement with the QoL literature discussed earlier, a number of studies demonstrate a lack of association between depression and physical measures of illness -illness severity, physical impairment, time since diagnosis, physical functioning, or illness progression [10,16,22,23]. In contradiction, two studies have found significant though weak associations between physical impairment and depression [12,18]; for instance one of these studies [12] determined that physical functioning accounted for just 3.2% of the total variance of psychological status.…”

“…As can be seen in Table 1, the sample sizes range from 10 to 2018 and studies encompass patients at various stages of illness severity, progression and type of MND. Despite these inconsistencies, the larger studies with sample sizes over 100 show a prevalence of depression between 11% and 15% [3,9,12].…”

“…"Concentration of rehabilitation efforts in this respect leads to a serious underestimation of the significance of assessing and managing the major psychological distress apparent in most patients with ALS." (p. 124) [12].…”

“…The relationship between functional and psychological status is one of the least studied features of MND [12]. Worthington [8] states that "the psychological aspects of the disease remain under researched and are often accorded secondary importance to the management of physical problems" (p. 190).…”

Activities of daily living in motor neuron disease: role of behavioural and motor changes

“…One study investigated whether general functional assessments were sensitive to disability in MND, 9 while another explored the contribution of functional impairment to patient psychological distress. 10 It remains unknown, however, how functional decline relates to the severity of MND. 11 It may be predicted that upper limb dysfunction is a major determinant of ADL given their dependence on hand function, but the contribution of behavioural changes in functional disability in MND is unknown.…”