scholarly journals The Use of Integrative Therapies in Patients with Amyotrophic Lateral Sclerosis in Shanghai, China

2013 ◽  
Vol 2013 ◽  
pp. 1-6 ◽  
Author(s):  
Weidong Pan ◽  
Xiangjun Chen ◽  
Jie Bao ◽  
Yu Bai ◽  
Hua Lu ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Household Income ◽  
Strong Association ◽  
Chinese Herb ◽  
Epidemiological Survey ◽  
It Use ◽  
Limb Pain ◽  
Cross Sectional ◽  
Integrative Therapies ◽  
Lateral Sclerosis

Objective. To investigate the current use of integrative therapies (IT) in the treatment of patients with amyotrophic lateral sclerosis (ALS).Methods. A cross-sectional, multicenter clinical epidemiological survey was conducted in 12 hospitals in Shanghai. We investigated the type and frequency of IT use and determined whether the use of IT correlated with demographic, social, or disease-specific characteristics in our patient population.Results. A total of 231 (89.5%) of 258 patients with ALS were eligible for the study and 229 (99% of all) of 231 reported the use of at least one IT for the treatment of ALS. Vitamins and Chinese herb decoctions, Chinese herb compounds, massage therapy, and acupuncture were the 5 most commonly used therapies. There was a strong association between education level, income, and use of IT. A household income of more than 75,000 RMB ($49,995) correlated with multiple IT use, and married patients used IT more often than single individuals. The main reasons for using IT were to treat weakness and fatigue, muscle atrophy, the development of ALS, depression, insomnia, limb pain or numbness, and side effects associated with Riluzole.Conclusion. The use of IT is common in patients with ALS in Shanghai. Vitamins and TCM are the most used additional therapies and the widespread and largely unexamined use of IT for ALS requires more attention.

scholarly journals How Loan Bank of Assistive Technology Impacts on Life of Persons with Amyotrophic Lateral Sclerosis and Neuromuscular Diseases: A Collaborative Initiative

2021 ◽  
Vol 18 (2) ◽  
pp. 763
Author(s):  
Thais Pousada ◽  
Jessica Garabal-Barbeira ◽  
Cristina Martínez ◽  
Betania Groba ◽  
Laura Nieto-Riveiro ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Assistive Technology ◽  
Positive Impact ◽  
Outcome Measurement ◽  
Neuromuscular Diseases ◽  
Three Dimensions ◽  
Assistive Device ◽  
Cross Sectional ◽  
The Impact ◽  
Lateral Sclerosis

(1) Background: The study is focused on the implementation of outcome measurement tools to assess the impact of an assistive device from a loan bank in the lives of people with Amyotrophic Lateral Sclerosis and Neuromuscular Diseases. The secondary purpose is to analyse the correct matching between the person and technology, derived from the counselling of an occupational therapist. (2) Methods: Cross-sectional study. The sample was formed by 28 people with rare neurodegenerative disorders. A specific questionnaire, the Psychosocial Impact of Assistive Device Scale (PIADS), and the Matching Person and Technology (MPT) tool were applied to collect the data. (3) Results: The dimension of the PIADS with the best score was competence, and the variations according to gender were not remarkable. The three dimensions of the PIADS (competence, adaptability, and self-esteem) were correlated positively between them and with the mean score of the MPT tool (p < 0.01). The type of assistive technology (AT), diagnosis, and correct match between person–technology are the main factors that condition a positive impact. (4) Conclusions: The results noted the importance of assessing the needs, demands, and contexts of people with rare neurodegenerative diseases to prescribe the best AT. Loan banks of AT have to be considered a valid service that complements their lack in public health services.

scholarly journals Independent home use of a brain-computer interface by people with amyotrophic lateral sclerosis

Neurology ◽  
2018 ◽  
Vol 91 (3) ◽  
pp. e258-e267 ◽  
Author(s):  
Jonathan R. Wolpaw ◽  
Richard S. Bedlack ◽  
Domenic J. Reda ◽  
Robert J. Ringer ◽  
Patricia G. Banks ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Brain Computer Interface ◽  
Computer Interface ◽  
It Use ◽  
Technical Problems ◽  
Rapid Disease Progression ◽  
And Performance ◽  
Lateral Sclerosis

ObjectiveTo assess the reliability and usefulness of an EEG-based brain-computer interface (BCI) for patients with advanced amyotrophic lateral sclerosis (ALS) who used it independently at home for up to 18 months.MethodsOf 42 patients consented, 39 (93%) met the study criteria, and 37 (88%) were assessed for use of the Wadsworth BCI. Nine (21%) could not use the BCI. Of the other 28, 27 (men, age 28–79 years) (64%) had the BCI placed in their homes, and they and their caregivers were trained to use it. Use data were collected by Internet. Periodic visits evaluated BCI benefit and burden and quality of life.ResultsOver subsequent months, 12 (29% of the original 42) left the study because of death or rapid disease progression and 6 (14%) left because of decreased interest. Fourteen (33%) completed training and used the BCI independently, mainly for communication. Technical problems were rare. Patient and caregiver ratings indicated that BCI benefit exceeded burden. Quality of life remained stable. Of those not lost to the disease, half completed the study; all but 1 patient kept the BCI for further use.ConclusionThe Wadsworth BCI home system can function reliably and usefully when operated by patients in their homes. BCIs that support communication are at present most suitable for people who are severely disabled but are otherwise in stable health. Improvements in BCI convenience and performance, including some now underway, should increase the number of people who find them useful and the extent to which they are used.

scholarly journals Amyotrophic Lateral Sclerosis Knowledge among University Students

2020 ◽  
pp. 26-33
Author(s):  
Muhammad Shahid Iqbal ◽  
Salah-Ud-Din Khan ◽  
Eldowaik Mohamed Salah Saad ◽  
Muhammad Zahid Iqbal
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Medical Students ◽  
Observational Study ◽  
Social Science ◽  
University Students ◽  
Healthcare Provider ◽  
The Other ◽  
Cross Sectional ◽  
Adequate Knowledge ◽  
Lateral Sclerosis

Objective: The objective of the study was to evaluate the knowledge of ALS among students in a university in Malaysia. Methods: A cross-sectional and observational study was performed among the students of three different healthcare provider faculties (Medical, Pharmacy and Dental) in a university with the help of pre-validated research questionnaire. The Statistical Package for Social Science (SPSS) Version 24.0 was used to analyze and present the data. Results: A total of 268 university students from three faculties participated in the current study. The medical faculty students and final year students had more appropriate knowledge towards the ALS. Conclusion: Overall appropriate knowledge was observed among the studied faculty students. The present study concluded that medical students had adequate knowledge of ALS than the other two faculty students.

scholarly journals Profile of Patients with Amyotrophic Lateral Sclerosis Across Continuum of Care

2014 ◽  
Vol 41 (2) ◽  
pp. 246-252 ◽  
Author(s):  
Vahe Kehyayan ◽  
Lawrence Korngut ◽  
Nathalie Jetté ◽  
John P. Hirdes
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Home Care ◽  
Comparison Group ◽  
Cross Sectional Study ◽  
Assessment Instrument ◽  
Cross Sectional ◽  
Home Care Nursing ◽  
Als Patients ◽  
Lateral Sclerosis

Objective:This study describes the socio-demographic and clinical profile of persons with amyotrophic lateral sclerosis (ALS) in home care, nursing homes and complex continuing care settings in several Canadian jurisdictions.Methods:A cross-sectional study was conducted using available Resident Assessment Instrument (RAI 2.0 and RAI Home Care) national databases from 1996- 2011. The profile of ALS patients was compared with patients without pre-specified neurological conditions.Results:There were 2,092 ALS patients identified in these settings. Persons with ALS were more likely than those in the comparison group to suffer from health instability (25.4%) and minor to major depressive symptoms (27.2%) , to experience falls (44.0%) and weight loss (22.9%), to require extensive assistance in activities of daily living (54.9%), and to receive rehabilitation services: physical (23.9%), speech language pathology (8.9%), and occupational therapy 43.3%).Conclusions:The ALS population in this study are greatly affected by a number of health issues. They are more likely than the comparison group to require therapies, medical interventions, and psychotropic drug use. While persons with ALS have a poor prognosis, a great deal could be done to enhance their quality of life and the quality of care they receive.

P-NU005. Nerve cross-sectional area as a surrogate marker of peripheral nerve degeneration in amyotrophic lateral sclerosis

2021 ◽  
Vol 132 (8) ◽  
pp. e118
Author(s):  
Toh Tsun Haw ◽  
Nur Adilah Abdul Aziz ◽  
Mohd Azly Yahaya ◽  
Ee Chin Loh ◽  
David Capelle ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Peripheral Nerve ◽  
Surrogate Marker ◽  
Cross Sectional Area ◽  
Nerve Degeneration ◽  
Sectional Area ◽  
Cross Sectional ◽  
Lateral Sclerosis

Relationship between Pain and Functional Status in Patients with Amyotrophic Lateral Sclerosis: A Multicenter Cross-Sectional Study

2018 ◽  
Vol 21 (5) ◽  
pp. 588-591 ◽  
Author(s):  
Natsuko Ishida ◽  
Shuya Hongo ◽  
Ayaka Kumano ◽  
Hiroyuki Hatta ◽  
Nobuyuki Zakoji ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Functional Status ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Lateral Sclerosis

scholarly journals Psychological flexibility and attitudes toward evidence-based interventions by amyotrophic lateral sclerosis patients

PeerJ ◽  
2019 ◽  
Vol 7 ◽  
pp. e6527
Author(s):  
James R. Pearlman ◽  
Einar B. Thorsteinsson
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Health Care Professionals ◽  
Relational Frame Theory ◽  
Psychological Flexibility ◽  
Well Being ◽  
Evidence Based ◽  
Cross Sectional ◽  
Endoscopic Gastrostomy ◽  
Relational Frame ◽  
Lateral Sclerosis

Objective Declining a percutaneous endoscopic gastrostomy (PEG) or non-invasive ventilation (NIV) by people with amyotrophic lateral sclerosis (ALS) is often contrary to advice provided by health-care-professionals guided by evidence-based principles. This study proposes relational frame theory (RFT) to offer a viable explanation of this phenomenon. Design A total of 35 people (14 female, 21 male) aged between 34 and 73 years, with ALS, participated in this cross-sectional research. Main outcome measures This research examined the predictive power and interaction effect of psychological flexibility (the fundamental construct of RFT) and psychological well-being on attitudes toward intervention options. Results Participants with high psychological flexibility reported lower depression, anxiety, and stress, and higher quality of life. In addition, psychological flexibility was predictive of a participant’s understanding and acceptance of a PEG as an intervention option. Psychological flexibility was not found to be a significant predictor of understanding and acceptance of NIV. Conclusion Although the criterion measure had not been piloted or validated outside of the current study and asks about expected rather than actual acceptance, findings suggest that applied RFT may be helpful for clients with ALS.

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