Quality of life in patients with amyotrophic lateral sclerosis: perceptions, coping resources, and illness characteristics.

OBJECTIVE

To assess and compare quality of life (QOL) for two groups of patients with amyotrophic lateral sclerosis (ALS): (1) those reporting a more positive quality of life and (2) those reporting a more negative quality of life.

METHODS

One hundred patients with ALS participated in this cross-sectional, descriptive study conducted in an ALS clinic. Quality of life was graded in two ways: (1) a global question about present QOL, giving four choices (life could not be better, usually good, sometimes good, and not good) which the researchers divided into two groups: the more positive QOL and the more negative QOL and (2) patients' responses to a 25-item internally generated open-ended survey. The Appel ALS Rating Scale measured objective data for physical strength and functioning.

RESULTS

One hundred patients (68 men and 32 women) with a mean age of 58.2 (range, 29-82) years participated in the study. The average disease duration was 1.9 (range, 0.08-15) years. Patients who reported the more positive QOL were younger, had a shorter disease duration, and experienced less disease severity (p < 0.05). Those endorsing the more positive QOL reported more adequate finances and less stress over disease characteristics (p < 0.05).

CONCLUSIONS

Illness characteristics do influence QOL for patients with ALS, but they are not the only concerns. When measuring QOL in patients with ALS, the unique features of the psychosocial factors, personality traits, and spiritual factors, in addition to disease symptoms, need to be identified and discussed with patients and families throughout the illness.