Emotional adjustment in amyotrophic lateral sclerosis (ALS)

Abstract

Despite the devastating motor impairment, a significant number of patients with amyotrophic lateral sclerosis (ALS) maintain a good psychosocial adjustment. Here we investigated whether this is specific for ALS or a more general characteristic of terminal disease. Psychosocial adjustment was investigated in 30 ALS patients, 29 cancer patients in palliative treatment and 29 age-, gender- and level of education-matched healthy controls. Subjective quality of life (sQoL), degree of depressive symptoms and coping were evaluated as measures of psychosocial adjustment. Personality factors were described. ALS and cancer patients showed a good psychosocial adjustment. Subjective QoL and depression did not differ significantly. Both patient groups presented a good sQoL. The level of mild depressive symptoms in both patient groups was similar and none showed clinically relevant depression. ALS patients expressed fewer active coping strategies than cancer patients which were explained by gender differences. Both patient groups showed comparable psychosocial adjustment to their disease. Overall, in terminally ill patients the psychological response to the prognosis is not associated with neurobiological changes (e.g., associated with subclinical deficits in ALS) or with physical decline.

Retrospective Consent to Hemicraniectomy after Malignant Stroke among the Elderly, Despite Impaired Functional Outcome

“…This could also explain the fact that only 9% of the older patients used antidepressants compared with 58% of the younger patients. Good psychosocial adaption to severe chronic disease has also been observed in patients in the final palliative stages of cancer and in locked-in patients after stroke [22] . Still, although the younger group contained more patients who would retrospectively not give consent, the overall acceptance for DHC is high.…”

“…Our findings indicate that the preparedness to be content to be alive and to accept disability seems to be higher among older patients. Studies of QoL associated with other severe diseases such as amyotrophic lateral sclerosis showed that a high level of previous health and a short time for adaptation lead to lower levels of QoL and acceptance of disability [22] . The fact that elderly patients already have experienced a higher burden of chronic disease may help them develop better disease acceptance than younger subjects whose condition has changed rapidly from good health to a severely disabled state.…”

Cognitive-constructivist Approach in Medical Settings: The Use of Personal Meaning Questionnaire for Neurological Patients’ Personality Investigation

“…Of greater importance appears to be the tendency of ALS patients to actively negate the disease, so relegating it out of conscious awareness (Brown and Mueller, 1970; Grossman et al, 2006). In ALS, the so-called ‘ disability paradox’ concerns evidence that subjective QoL and emotional well-being in ALS patients are comparatively good and partially unrelated to physical functioning and disease severity and progression (Kurt et al, 2007; Lulé et al, 2008, 2012; Norris et al, 2010). …”

Psychological Intervention in Amyotrophic Lateral Sclerosis: Suggestions for Clinical Practice

“…At home, particular attention is placed to family dynamics; the intervention here is characterized by the creation of a proper setting. In Help Groups the psychologist focuses on the resources of each participant; coping strategies [29] are shared among the participants to face distress and to create a networking against existential isolation [18][19][20][21][22][23][24][25][26][27][28][29][30]. During the last decade, attention to psychological approach in neuromuscular diseases increased [31], nevertheless a definite model of intervention is absent and there is a lack of guidelines in literature.…”

“…Psychological intervention during the progression of the disease consists in one or more psychoeducational sessions, psychological support and mediation. The aim is to restrain the distress and to reinforce the resources of the context [17][18][19][20][21].…”