J Korean Neurol Assoc.  2006 Jun;24(3):252-259.

Preliminary Study on Clinical Characteristics and Caregivers' Burden of Korean Patients with Amyotrophic Lateral Sclerosis; Survey Based on Database of Korea ALS Association

• Park KH
• Kim HY
• Nam YH
• Kim J
• Joo IS
• Sung JJ
• Lee KW
• Kim SH

Abstract

BACKGROUND: Accurate information on natural history and prognosis of Amyotrophic Lateral Sclerosis (ALS) is useful for patients, their families, and clinicians. This study was designed to determine natural history and prognosis in Korean ALS patients.
METHODS
We surveyed 311 ALS patients who registered in Korean ALS association, on clinical and epidemiological characteristics association with demographic factors, initial symptoms, time delay of diagnosis, caregivers' burden.
RESULTS
Ratio of gender was 1.6:1.0 (M:F) and the mean age onset was 50.2 years. Limb onset type was two times more frequent than bulbar onset type. Mean time delay from onset to diagnosis was 14.7 months, and neurologist did most of the diagnosis (90.4%). Multiple linear regression analyses of patient and caregiver variables on caregiver burden and care stress were significantly and independently associated with declined physical function, pain, ventilator application and short disease duration of patients.
CONCLUSIONS
Present preliminary results on clinical characteristics and caregivers' burden of Korean ALS patients would be used as the basic data for the large scale of epidemiologic study on Korean ALS.

Keyword

Amyotrophic lateral sclerosis; Natural history; Caregiver burden

MeSH Terms

Amyotrophic Lateral Sclerosis*
Caregivers
Demography
Diagnosis
Epidemiologic Studies
Extremities
Humans
Korea*
Linear Models
Natural History
Prognosis
Ventilators, Mechanical