Self Perceived Emotional Functioning of Spanish Patients with Amyotrophic Lateral Sclerosis: A Longitudinal Study

Abstract

Background: ALS is a neurodegenerative disease of the entire motor system that most frequently ends with respiratory arrest in few years. Its diagnosis and the rapid progression of the motor dysfunctions produce a continued emotional impact. Studies on this impact are helpful to plan adequate psychotherapeutic strategies. Objective: To assess and analyze: First: How the patients with ALS perceive their emotional health. Second: The emotional impact of their physical disabilities. Third: The physical disabilities with highest emotional impact. Fourth: The feelings with highest emotional impact. Methods: Up to 110 Spanish patients with ALS were assessed less than 1 year from diagnosis, then twice more at 6 month intervals, using the ALS Quality of Life Assessment Questionnaire (ALSAQ-40) validated for use in Spanish. Descriptive analysis and correlation between variables were obtained. Results: Worries about the future, of lack of freedom, and of being a burden were prevalent feelings. On average depression was felt only “sometimes.” Only 25% of the variations in the emotional state were explained by changes in the physical state at first evaluation, and 16% at the last one. Emotional functioning correlated significantly with the physical disabilities at first and second evaluation, less so at third. Communication disabilities always had the highest impact. Depression at first evaluation and hopelessness at the next two evaluations had the highest emotional impact. Hopelessness did not correlate with any physical disability at the third evaluation. On the whole, emotional dysfunction was self perceived as intermediate (between none and worst), and remained stable at 1 year follow up, in both bulbar and spinal onset patients. Conclusions: Physical dysfunctions per se have a limited role in patients´ emotional distress. Communication disabilities, as well as feelings of depression at early stages of illness, and of hopelessness later on, had the most impact. This requires their careful therapeutic attention. On average, Spanish patients with ALS cope with their disease, overcoming depression, which is not felt often, and with just mid levels of emotional dysfunction.

Comparative assessment and monitoring of deterioration of articulatory organs using subjective and objective tools among patients with amyotrophic lateral sclerosis

“…Existing research does not mention any relationship between a progressive deterioration of motor functions and disorders of emotional nature [42]. Some earlier publications noted 'the disability paradox' phenomenon, a term that refers to the alleged lack of relationship between the subjective perception of physical dysfunction reported by ALS patients and a decline in quality of life [43][44].…”

Patients’ self‐perceived burden, caregivers’ burden and quality of life for amyotrophic lateral sclerosis patients: a cross‐sectional study

“…Among ALS patients, being a burden was a prevalent feeling as disease progression (Mora et al . ). A cross‐sectional survey found that SPB was significantly correlated with the physical function of ALS patients (Chiò et al .…”

Comparative assessment and monitoring of deterioration of articulatory organs using subjective and objective tools among patients with amyotrophic lateral sclerosis

“…Our study shows that the ALS patients presenting mild impairment of the articulatory system, Existing research does not mention any relationship between a progressive deterioration of motor functions and disorders of emotional nature [42]. Some earlier publications noted 'the disability paradox' phenomenon, a term that refers to the alleged lack of relationship between the subjective perception of physical dysfunction reported by ALS patients and a decline in quality of life [43][44].…”