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Self perceived emotional functioning of spanish patients with amyotrophic lateral sclerosis: a longitudinal study.

Mora JS, Salas T, Fajardo ML, Iváñez L, Rodríguez-Santos F - Front Psychol (2013)

Bottom Line: Emotional functioning correlated significantly with the physical disabilities at first and second evaluation, less so at third.Hopelessness did not correlate with any physical disability at the third evaluation.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.

View Article: PubMed Central - PubMed

Affiliation: ALS Unit, Department of Neurology, Hospital Carlos III Madrid, Spain.

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.

No MeSH data available.


Related in: MedlinePlus

Evolution of EMO along the three evaluations for the total sample.
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Figure 1: Evolution of EMO along the three evaluations for the total sample.

Mentions: In spite of increasing scores in the physical areas (MOB, ADL, EAT, COM) as the disease progresses, the emotional area (EMO) scores did not significantly increase (t-test for independent samples; Table 2). During the three evaluations, there are no significant differences in EMO between patients with bulbar and spinal onset, in spite of them having significant differences in physical functions: higher MOB scores in spinal onset patients, and higher EAT and COM scores in bulbar onset patients, as expected (Table 2). During the study period, mean EMO scores remain at around mid level, between best and worst. There are no significant differences in EMO scores between the first and third evaluations (1.74 points), and even less between the second and third evaluations (0.33 points; Figure 1).


Self perceived emotional functioning of spanish patients with amyotrophic lateral sclerosis: a longitudinal study.

Mora JS, Salas T, Fajardo ML, Iváñez L, Rodríguez-Santos F - Front Psychol (2013)

Evolution of EMO along the three evaluations for the total sample.
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC3539828&req=5

Figure 1: Evolution of EMO along the three evaluations for the total sample.
Mentions: In spite of increasing scores in the physical areas (MOB, ADL, EAT, COM) as the disease progresses, the emotional area (EMO) scores did not significantly increase (t-test for independent samples; Table 2). During the three evaluations, there are no significant differences in EMO between patients with bulbar and spinal onset, in spite of them having significant differences in physical functions: higher MOB scores in spinal onset patients, and higher EAT and COM scores in bulbar onset patients, as expected (Table 2). During the study period, mean EMO scores remain at around mid level, between best and worst. There are no significant differences in EMO scores between the first and third evaluations (1.74 points), and even less between the second and third evaluations (0.33 points; Figure 1).

Bottom Line: Emotional functioning correlated significantly with the physical disabilities at first and second evaluation, less so at third.Hopelessness did not correlate with any physical disability at the third evaluation.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.

View Article: PubMed Central - PubMed

Affiliation: ALS Unit, Department of Neurology, Hospital Carlos III Madrid, Spain.

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.

No MeSH data available.


Related in: MedlinePlus