Abstract
For the current study the Lazarian stress-coping theory and the appendant model of psychosocial adjustment to chronic illness and disabilities (Pakenham, 1999) has shaped the foundation for identifying determinants of adjustment to ALS. We aimed to investigate the evolution of psychosocial adjustment to ALS and to determine its long-term predictors. A longitudinal study design with four measurement time points was therefore, used to assess patients' quality of life, depression, and stress-coping model related aspects, such as illness characteristics, social support, cognitive appraisals, and coping strategies during a period of 2 years. Regression analyses revealed that 55% of the variance of severity of depressive symptoms and 47% of the variance in quality of life at T2 was accounted for by all the T1 predictor variables taken together. On the level of individual contributions, protective buffering, and appraisal of own coping potential accounted for a significant percentage in the variance in severity of depressive symptoms, whereas problem management coping strategies explained variance in quality of life scores. Illness characteristics at T2 did not explain any variance of both adjustment outcomes. Overall, the pattern of the longitudinal results indicated stable depressive symptoms and quality of life indices reflecting a successful adjustment to the disease across four measurement time points during a period of about two years. Empirical evidence is provided for the predictive value of social support, cognitive appraisals, and coping strategies, but not illness parameters such as severity and duration for adaptation to ALS. The current study contributes to a better conceptualization of adjustment, allowing us to provide evidence-based support beyond medical and physical intervention for people with ALS.
Highlights
Being diagnosed with amyotrophic lateral sclerosis (ALS) constitutes for the afflicted person and its social environment a sudden and, considering the whole range of consequences, an unknown, critical life event
We showed that social support, appraisal of coping potential and coping strategies such as independence, seeking for support and information and avoidance accounted for most of the variance in quality of life (QoL), and depression scores (Figure 1)
In the current study we examined weather stress-coping model variables found at T1 would significantly predict depression and quality of life at T2
Summary
Being diagnosed with ALS constitutes for the afflicted person and its social environment a sudden and, considering the whole range of consequences, an unknown, critical life event. In an impressive meta-analysis Pagnini and colleagues showed that average scores for depressive symptoms as assessed by questionnaires such as BDI (Beck Depression inventory) or HADS (Hospital Anxiety and Depression Scale) are highly confounded with physical symptoms of the illness which are not necessarily related to depressiveness They recommend the use of instruments developed for people with ALS, such as the ADI-12 (Hammer et al, 2008) or the use of clinical interview in case of suspicion of a depressive disorder if the communication ability is still preserved (Pagnini et al, 2015)
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