Psychological well-being and quality of life in Amyotrophic Lateral Sclerosis. State of the art and intervention prospectives

Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease with a progressive and rapid course that, so far, cannot be stopped or reversed. The disease is clinically characterised by progressive increasing weakness leading to death by respiratory insufficiency, usually within three years. What is the psychological impact of ALS? How people cope with this illness? What are clinical interventions that may provide support and improve quality of life (QoL)? In the attempt to answer these questions, existing literature has been reviewed, summarising relevant results about psychological well-being in the ALS field and critically revising used methods. Furthermore, publication trends and limitations of previous studies will be enhanced. Psychological well-being in ALS has been studied in term of quality of life, depression, anxiety, pain, spiritual and existential issues, hope and hopelessness. Results from literature are often discordant and sometimes counterintuitive. For example, is it not clear the relation between quality of life and physical impairments. There are no research studies that have investigated the effect of psychological support. However, it is possible to make some hypothesis about psychological interventions that could improve psychological well-being of ALS patients.