Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: A scoping review

2017 ◽  
Vol 26 (23-24) ◽  
pp. 4129-4152 ◽  
Author(s):  
Juyeon Oh ◽  
Jung A Kim
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Supportive Care ◽  
Motor Neuron ◽  
Motor Neuron Disease ◽  
Scoping Review ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Lateral Sclerosis

Unmet supportive care needs mediate the relationship between functional status and quality of life in patients with amyotrophic lateral sclerosis

2019 ◽  
Vol 17 (6) ◽  
pp. 650-654 ◽  
Author(s):  
Juyeon Oh ◽  
Seung Hyun Kim ◽  
Jung A Kim
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Supportive Care ◽  
Functional Status ◽  
Mediating Effect ◽  
Supportive Care Needs ◽  
Care Needs ◽  
The Relationship ◽  
Lateral Sclerosis

AbstractObjectiveThe aims of this study were to identify the unmet care needs and to examine the mediating effect of unmet supportive care needs in the relationship between functional status and quality of life (QOL) in Korean patients with amyotrophic lateral sclerosis (ALS).MethodThis was a cross-sectional study conducted among 186 patients with ALS recruited from a tertiary hospital in Seoul, South Korea. ALS patients' functional status, unmet supportive care needs, and QOL were assessed by Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised, the Amyotrophic Lateral Sclerosis Supportive Care Needs Instrument, and the Amyotrophic Lateral Sclerosis Specific Quality of Life – Revised Instrument, respectively. Mediation analysis was tested using Baron and Kenny's regression analysis and a Sobel test.ResultThe mean score for functional status was 33.35 ± 8.89; for unmet supportive care needs it was 2.40 ± 0.66; and for QOL it was 4.95 ± 1.29. Functional status was significantly correlated with unmet care needs and QOL. Unmet care needs satisfaction demonstrated a complete mediating effect on the relationship between functional status and QOL of the patients with ALS (β = –0.53, p < 0.001) and the effect was significant (Sobel test; Z = 5.48, p < 0.001).Significance of resultsAlthough QOL was negatively affected by the functional status in our sample, the relationship was fully mediated via unmet supportive care needs. Because there is no cure for ALS, and the condition is rapidly progressive with a lethal outcome, providing care by meeting patients’ needs is a critical aspect of caring for these patients. Early assessment of supportive care needs, providing services, and referring ALS patients to appropriate resources could enhance their QOL.

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

2018 ◽  
Vol 16 (6) ◽  
pp. 692-697 ◽  
Author(s):  
Juyeon Oh ◽  
Seong-il Oh ◽  
Jung A Kim
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Supportive Care ◽  
Convergent Validity ◽  
Psychometric Evaluation ◽  
Social Needs ◽  
Assessment Instrument ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Good Test ◽  
Lateral Sclerosis

AbstractObjectiveThe 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.MethodThis 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.ResultThe 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 resultsThe 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.

scholarly journals Patterns of Weakness, Classification of Motor Neuron Disease, and Clinical Diagnosis of Sporadic Amyotrophic Lateral Sclerosis

2015 ◽  
Vol 33 (4) ◽  
pp. 735-748 ◽  
Author(s):  
Jeffrey M. Statland ◽  
Richard J. Barohn ◽  
April L. McVey ◽  
Jonathan S. Katz ◽  
Mazen M. Dimachkie
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Motor Neuron ◽  
Motor Neuron Disease ◽  
Clinical Diagnosis ◽  
Sporadic Amyotrophic Lateral Sclerosis ◽  
Lateral Sclerosis

Minocycline for amyotrophic lateral sclerosis or motor neuron disease

2021 ◽  
Vol 2021 (11) ◽  
Author(s):  
Sivakumar Sathasivam ◽  
Robert Addison-Jones ◽  
Robert G Miller ◽  
Dan H Moore ◽  
Carolyn A Young
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Motor Neuron ◽  
Motor Neuron Disease ◽  
Lateral Sclerosis

scholarly journals Amyotrophic lateral sclerosis: one or multiple causes?

2011 ◽  
Vol 3 (1) ◽  
pp. 4 ◽  
Author(s):  
Aline Furtado Bastos ◽  
Marco Orsini ◽  
Dionis Machado ◽  
Mariana Pimentel Mello ◽  
Sergio Nader ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Motor Neuron ◽  
Motor Neuron Disease ◽  
Motor Neurons ◽  
Viral Infections ◽  
Vigorous Physical Activity ◽  
Disease Etiology ◽  
New Research ◽  
Lateral Sclerosis

The Amyotrophic lateral sclerosis (ALS) is the most common form of motor neuron disease in the adulthood, and it is characterized by rapid and progressive compromise of the upper and lower motor neurons. The majority of the cases of ALS are classified as sporadic and, until now, a specific cause for these cases still is unknown. To present the different hypotheses on the etiology of ALS. It was carried out a search in the databases: Bireme, Scielo and Pubmed, in the period of 1987 to 2011, using the following keywords: Amyotrophic lateral sclerosis, motor neuron disease, etiology, causes and epidemiology and its similar in Portuguese and Spanish. It did not have consensus as regards the etiology of ALS. Researches demonstrates evidences as regards intoxication by heavy metals, environmental and occupational causes, genetic mutations (superoxide dismutase 1), certain viral infections and the accomplishment of vigorous physical activity for the development of the disease. There is still no consensus regarding the involved factors in the etiology of ALS. In this way, new research about these etiologies are necessary, for a better approach of the patients, promoting preventive programs for the disease and improving the quality of life of the patients.

scholarly journals Far beyond the motor neuron: the role of glial cells in amyotrophic lateral sclerosis

2016 ◽  
Vol 74 (10) ◽  
pp. 849-854
Author(s):  
Paulo Victor Sgobbi de Souza ◽  
Wladimir Bocca Vieira de Rezende Pinto ◽  
Flávio Moura Rezende Filho ◽  
Acary Souza Bulle Oliveira
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Motor Neuron ◽  
Motor Neuron Disease ◽  
Glial Cell ◽  
Glial Cells ◽  
Motor Neurons ◽  
Cell Interaction ◽  
Cell Functions ◽  
Glial Cell Interactions ◽  
Lateral Sclerosis

ABSTRACT Motor neuron disease is one of the major groups of neurodegenerative diseases, mainly represented by amyotrophic lateral sclerosis. Despite wide genetic and biochemical data regarding its pathophysiological mechanisms, motor neuron disease develops under a complex network of mechanisms not restricted to the unique functions of the alpha motor neurons but which actually involve diverse functions of glial cell interaction. This review aims to expose some of the leading roles of glial cells in the physiological mechanisms of neuron-glial cell interactions and the mechanisms related to motor neuron survival linked to glial cell functions.

scholarly journals Spirituality and/or religious faith: A means for coping with the effects of amyotrophic lateral sclerosis/motor neuron disease?

2015 ◽  
Vol 13 (6) ◽  
pp. 1603-1614 ◽  
Author(s):  
Mary R. O'brien ◽  
David Clark
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Motor Neuron ◽  
Motor Neuron Disease ◽  
Personal Narratives ◽  
Religious Faith ◽  
Terminal Condition ◽  
Spiritual Needs ◽  
Religious Thoughts ◽  
Lateral Sclerosis ◽  
Personal Spirituality

AbstractObjective:The notion of spirituality/religious belief is recognized internationally as a domain within end-of-life care and is important in patients' and carers' quality-of-life. When faced with incurable illness, patients often become more philosophical about their life; many seek comfort in spiritual or religious philosophies. Our intention was to understand how personal spirituality and religious faith might help those living with amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) cope with their impending death.Method:Unsolicited narratives (internet and print-published) written by individuals diagnosed with the terminal condition of ALS/MND were analyzed thematically. Narratives from 161 individuals diagnosed with ALS/MND written over a period of 37 years (from 1968 to 2005) were included.Results:Our findings reveal that religious faith sustains and helps people to avoid despair, and personal spirituality helps them make sense of what is happening to them.Significance of Results:The use of personal narratives by people with ALS/MND has provided a vehicle for sharing their deepest spiritual and religious thoughts with others. The place of spirituality and religious faith within ALS/MND care should not be underestimated. Assessment of religious or spiritual needs should become a routine part of practice and is the responsibility of all members of the multidisciplinary team.

Sign in / Sign up

Export Citation Format

Share Document