Study examines major stressors in ALS

Health care professionals treating patients with amyotrophic lateral sclerosis should apply a holistic approach to treatment and care, researchers report in ALS and other Motor Neuron Disorders.Marilyn Trail and colleagues set out to identify and compare the main existential, physical, and psychosocial factors that caused stress in patients with ALS and their caregivers. They analyzed responses from 66 patients with ALS and 61 caregivers who attended an ALS clinic at the Baylor College of Medicine Department of Neurology in Houston, Texas, USA. The participants were asked to choose their three most important concerns. For analysis purposes the data was categorised into three areas: existential, physical, and psychosocial. The Appel ALS Rating Scale (AALS) was used to measure disease symptom severity, and at the time the patients completed the survey, their mean AALS total score was 77.0 (range 34-132), indicating mild to moderate disability. "The most important stressors identified by patients and caregivers were existential concerns (86.4% of patients and 79.7% of caregivers) and physical stressors (80.3% of patients and 76.3% of caregivers)," the authors report. Fewer than half of the participants in both groups referred to psychosocial stressors (38%), but when the investigators analyzed the domain specific items, there was a significant difference between patients and caregivers on worries about the patient's dependency (37.9% of patients and 6.8% of caregivers).On the basis of these findings Trail and colleagues say that "health care professionals should apply a holistic approach to treatment and care of patients with ALS." Families should be included in the process, they say, "and it should not be assumed that patients and caregivers will agree on all issues." Future research should focus on therapeutic interventions to help ALS patients and their families cope with the multiple stressors accompanying a catastrophic illness, they suggest.Reference...