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The amyotrophic lateral sclerosis supportive care needs assessment instrument: Development and psychometric evaluation

Published online by Cambridge University Press:  29 January 2018

Juyeon Oh
Division of Nursing, Hanyang University and Cell therapy Center for Intractable Disorders, Hanyang University Hospital, Seoul
Seong-il Oh
Department of Neurology, Busan Paik Hospital, Inje University College of Medicine, Busan
Jung A Kim*
Division of Nursing, Hanyang University, Seoul, Korea
Author for correspondence: Jung A Kim, Division of Nursing, Hanyang University, 222 Wangsimni-ro, Seongdong-gu, Seoul, 04763, Korea. E-mail:



The aim of the study is to develop an amyotrophic lateral sclerosis supportive care needs (ALSSCN) instrument based on Fitch's Supportive Care Needs Framework and to test its psychometric properties.


This study consists of three parts: (1) item generation from the literature review and qualitative interview; (2) content validation; and (3) psychometric evaluation of the instrument. Participants who were diagnosed with ALS (n = 139) were recruited from two ALS clinics in Seoul, Korea, and Busan, Korea for the psychometric testing.


The ALSSCN consisted of 37 items with seven domains: physical, psychological, emotional, spiritual, social, informational, and practical needs. The Cronbach's alpha of each domain ranged from 0.61 (social needs) to 0.90 (emotional needs). The intra-class correlation coefficient for test-retest was 0.89, indicating good test-retest reliability. The overall ALSSCN was significantly negatively correlated with the quality of life, which supported convergent validity. Confirmatory factor analysis of the ALSSCN supported a seven-factor model.

Significance of results

The ALSSCN has acceptable internal consistency, stability, and content and construct validity in a Korean ALS population. ALSSCN is a psychometrically sound measure and can be adopted by healthcare professionals, researchers, and administrators to comprehensively assess the perceived supportive care needs of patients with ALS.

Original Article
Copyright © Cambridge University Press 2018 

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