Author(s): Nee L.; Granger N.; Young C.A.
Source: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration; 2018; vol. 19 ; p. 316
Publication Date: 2018
Publication Type(s): Conference Abstract
Abstract:Background: Various psychosocial factors have been implicated as determinants of quality of life (QoL) in ALS/MND. The importance of psychological factors has been reviewed (1) but recent literature search revealed no reviews of social factors. Objective(s): To conduct a systematic literature review to determine how social factors relate to QoL in ALS/MND. Method(s): Literature searches were conducted in February 2018 for papers in English, reporting findings exclusive to ALS/MND patients, in the following databases: Medline, Scopus, Web of Science, CINAHL, PsycINFO, AMED, BNI, EMBASE. Studies were required to include measures of QoL and a social factor with evidence on their quantitative relationship. Case studies, conference abstracts and studies on communication difficulties were excluded. Result(s): Eleven studies were identified; all observational, 9 cross-sectional and two longitudinal, published between 1999 and 2017 with sample sizes ranging from 27-162. Social factors examined were social support, social withdrawal, self-perceived burden, carer burden (effect on patients), social role functioning and socio-economic status. Assessment tools varied even within one factor; for example, six were used in measuring social support. In addition, assessment and conceptualisation of Qol varied. Social support was the most studied factor, with some influence on QoL in all 8 studies. Social withdrawal decreased QoL in two studies. Increased sense of burden worsened patient QoL, both when the patient felt a burden and the caregiver perceived being burdened. One study found that socio-economic status was correlated with QoL. The social role functioning subscale of the Short Form-36 did not correlate with QoL. Discussion and conclusions: The evidence that social factors influence QoL is of variable quality. Interpretation of the data is confounded by unclear definitions of the social factors and disparate assessment tools for factors and QoL. All studies were observational, so causality is difficult to establish and the majority of studies were crosssectional, precluding an understanding of how social factors affect QoL over time. Further work is required in this potentially important area.