[Quality of life of patients with amyotrophic lateral sclerosis].

BACKGROUND

Amyotrophic lateral sclerosis (ALS) leads to loss of important body functions, a huge need for assistance and is associated with a low quality of life (QoL). We have investigated QoL in ALS patients treated by a multidisciplinary ALS team, and to which degree this team met the patients' needs.

MATERIAL AND METHODS

The patients' health-related QoL was measured by use of SF-36, and content with the treatment offered by the team was evaluated through a structured interview of 14 ALS patients at the Neurological Department at Ullevål University Hospital, Oslo, Norway.

RESULTS

The patients reported low scores for physical QoL, but mental QoL was close to that of the general population. The patients were generally content with the treatment given by the ALS team. They were most content with the practical help given to organize their homes and the accessibility of different members of the team. They were least content with the psychological help and the information given to their relatives. Content with treatment was not correlated with self-perceived QoL or with physical disability.

INTERPRETATION

Our findings suggest that the patients are content with the ALS team, but that their psychological reactions and information to relatives are not handled well enough. Most ALS patients treated by the ALS team experience their life as meaningful, regardless of their degree of neurological dysfunction.