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

J Korean Neurol Assoc > Volume 24(3); 2006 > Article

Journal of the Korean Neurological Association 2006;24(3): 252-259.

국내 근위축성측삭경화증 환자의 임상 특성 및 간병부담에 관한 예비 연구; 한국ALS협회를 통한 설문조사 연구

박기형, 김현영a 남유현a 김주한a 주인수c 성정준d 이광우d 김승현a

한양대학교 의과대학 신경과학교실a, 가천의과대학교 신경과학교실b, 아주대학교 의과대학 신경과학교실c, 서울대학교 의과대학 신경과학교실d

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

Kee Hyung Park

Department of Neurology, Hanyang University College of Medicinea, Seoul; Department of Neurology, Gachon University College of Medicineb, Incheon; Department of Neurology, Ajou University College of Medicinec, Sewon; Department of Neurology, Seoul National University College of Medicined, Seoul, Korea

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 & 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. KeyWords:Amyotrophic lateral sclerosis, Natural history, Caregiver burden