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1.
Br J Community Nurs ; 27(4): 188-198, 2022 Apr 02.
Article in English | MEDLINE | ID: covidwho-1771806

ABSTRACT

Motor neurone disease or amyotrophic lateral sclerosis is a rapidly progressive terminal neurodegenerative condition caused by degeneration of the upper and lower motor neurones in the central nervous system of the brain. The effects of motor neurone disease are multifaceted, leading to many adjustments in everyday life. This literature review asked what the experiences of people living with motor neurone disease was before and during the COVID-19 pandemic and during the COVID-19 pandemic, especially in terms of their condition and the support they received from health and social care services. A key theme identified was lack of knowledge among professionals when they cared for people living with motor neurone disease and their families. This lack of knowledge often resulted in delayed diagnosis and poor standards of care. COVID-19 impacted on the care of people living with motor neurone disease and their families, and there is a paucity of evidence on how services were perceived by these groups during the COVID-19 pandemic. The experiences of people living with motor neurone disease and their families are currently missing in the literature. In conclusion, further studies are required to include care of people living with motor neurone disease and their families.


Subject(s)
COVID-19 , Motor Neuron Disease , Humans , Pandemics , Social Support , Social Work
2.
BMC Health Serv Res ; 21(1): 1230, 2021 Nov 13.
Article in English | MEDLINE | ID: covidwho-1526633

ABSTRACT

BACKGROUND: People living with Long Term Neurological Conditions (LTNCs) value peer support and social activities. Psychological support and wellbeing enables them to manage their condition. Social prescribing is a formal process of referring patients to a link worker to co-design a plan to improve their health and wellbeing. Intervention involves supporting participation in activities based within the individual's local community. This study aimed to explore the barriers and enablers to accessing social prescribing for people living with LTNCs (plwLTNCs). METHODS: A total of four focus groups were carried out with 17 participants, including different neurological conditions such as multiple sclerosis, Fragile X Syndrome, epilepsy, and traumatic brain injury. Two participants were family carers and supported people living with epilepsy and motor neurone disease. Findings were analysed using thematic analysis. RESULTS: Five themes were identified: (1) Lack of knowledge; (2) Service provision difficulties; (3) Benefits of social prescribing activities; (4) Physical barriers and (5) Psychological barriers. There was a lack of knowledge about social prescribing and what it actually was. Participants anticipated service provision difficulties relating to funding, link workers need for knowledge of LTNC's and for activities to be varied and individualised. The potential benefits of social prescribing activities were recognised across the groups especially its potential to tackle loneliness and to offer plwLTNC's purpose. Participants highlighted a number of physical barriers such as transport and accessibility; and psychological barriers such as anxiety and stigma. CONCLUSION: Social prescribing aims to address the health inequalities of those living with long-term conditions, however currently it is likely to exclude plwLTNCs. Recommendations for practice and future research are made.


Subject(s)
Caregivers , Motor Neuron Disease , Focus Groups , Humans , Loneliness , Qualitative Research
3.
Diabetes Metab Syndr ; 15(6): 102305, 2021.
Article in English | MEDLINE | ID: covidwho-1506436

ABSTRACT

Covid-19 associated several neurological manifestation in the form of Post-infectious transverse myelitis(TM) and para-infectious TM has been reported. A 54 years old female patient presented to us with acute retention of urine and upper motor neuron type of bilateral lower limb weakness in shock stage, after 12 days of covid-19 infection. MRI (3T) brain and spine showed no abnormality and Nerve conduction study showed acquired motor axonal polyradiculoneuropathy in bilateral lower limbs. We herein present an index case of MRI-negative myeloradiculoneuropathy following covid-19 infection.


Subject(s)
COVID-19/complications , Central Nervous System Diseases/pathology , Magnetic Resonance Imaging/methods , Motor Neuron Disease/pathology , SARS-CoV-2/isolation & purification , COVID-19/transmission , COVID-19/virology , Central Nervous System Diseases/etiology , Female , Humans , Middle Aged , Motor Neuron Disease/etiology
4.
J Med Internet Res ; 23(9): e28766, 2021 09 22.
Article in English | MEDLINE | ID: covidwho-1443964

ABSTRACT

Despite recent and potent technological advances, the real-world implementation of remote digital health technology in the care and monitoring of patients with motor neuron disease has not yet been realized. Digital health technology may increase the accessibility to and personalization of care, whereas remote biosensors could optimize the collection of vital clinical parameters, irrespective of patients' ability to visit the clinic. To facilitate the wide-scale adoption of digital health care technology and to align current initiatives, we outline a road map that will identify clinically relevant digital parameters; mediate the development of benefit-to-burden criteria for innovative technology; and direct the validation, harmonization, and adoption of digital health care technology in real-world settings. We define two key end products of the road map: (1) a set of reliable digital parameters to capture data collected under free-living conditions that reflect patient-centric measures and facilitate clinical decision making and (2) an integrated, open-source system that provides personalized feedback to patients, health care providers, clinical researchers, and caregivers and is linked to a flexible and adaptable platform that integrates patient data in real time. Given the ever-changing care needs of patients and the relentless progression rate of motor neuron disease, the adoption of digital health care technology will significantly benefit the delivery of care and accelerate the development of effective treatments.


Subject(s)
Motor Neuron Disease , Biomedical Technology , Caregivers , Health Personnel , Humans , Motor Neuron Disease/diagnosis , Motor Neuron Disease/therapy , Technology
5.
BMJ Case Rep ; 14(4)2021 Apr 21.
Article in English | MEDLINE | ID: covidwho-1197246

ABSTRACT

A previously fit and well 72-year-old man was referred to the acute medical unit with acute shortness of breath and confusion. He had presented 6 months earlier to his General Practitioner with a 6-month history of weight loss and lethargy. Despite CT imaging and extensive blood tests, no cause was found. He was having ongoing outpatient investigations, including a respiratory review leading up to his admission; the deterioration in his condition also coincided with the implementation of the COVID-19 lockdown. On admission, he was found to be in acute-on-chronic type 2 respiratory failure; examination revealed scattered fasciculations. Further inpatient electromyography (EMG) and nerve conduction study (NCS) confirmed motor neuron disease (MND). This case highlighted the importance of considering neuromuscular causes for acute respiratory failure in acute presentations and demonstrated the challenges in the diagnosis of MND in those presenting atypically with non-specific symptoms and the limitations of remote consultations in complex cases.


Subject(s)
Motor Neuron Disease , Respiratory Insufficiency , Weight Loss , Aged , COVID-19 , Humans , Male , Motor Neuron Disease/complications , Motor Neuron Disease/diagnosis , Respiratory Insufficiency/etiology
6.
BMJ Open ; 11(3): e044996, 2021 03 23.
Article in English | MEDLINE | ID: covidwho-1148166

ABSTRACT

INTRODUCTION: Motor neuron disease (MND) is a rapidly progressive and fatal neurodegenerative disorder with limited treatment options. The Motor Neuron Disease Systematic Multi-Arm Randomised Adaptive Trial (MND-SMART) is a multisite UK trial seeking to address the paucity in effective disease-modifying drugs for people with MND (pwMND). Historically, neurological trials have been plagued by suboptimal recruitment and high rates of attrition. Failure to recruit and/or retain participants can cause insufficiently representative samples, terminated trials or invalid conclusions. This study investigates patient-specific factors affecting recruitment and retention of pwMND to MND-SMART. Improved understanding of these factors may improve trial protocol design, optimise recruitment and retention. METHODS AND ANALYSIS: PwMND on the Scottish MND Register, Clinical Audit Research and Evaluation of MND (CARE-MND), will be invited to participate in a prospective observational cohort study that investigates factors affecting trial participation and attrition. We hypothesise that patient-specific factors will significantly affect trial recruitment and retention. Participants will complete the Hospital Anxiety and Depression Scale, 9-Item Patient Health Questionnaire and State-Trait Anxiety Inventory-Form Y to evaluate neuropsychiatric symptoms, the ALS-Specific Quality of Life Questionnaire-Brief Form and Centre for Disease Control and Prevention-Health-Related Quality of Life for quality of life and a novel study-specific questionnaire on Attitudes towards Clinical Trial Participation (ACT-Q). Clinical data on phenotype, cognition (Edinburgh Cognitive and Behavioural ALS Screen) and physical functioning (Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised) will also be collated. Caregivers will complete the Brief Dimensional Apathy Scale. After 12 months, a data request to MND-SMART will evaluate recruitment and retention. Descriptive statistics will summarise and compare assessments and participants reaching impairment thresholds. Variable groupings: attitudes, quality of life, cognition, behaviour, physical functioning, neuropsychiatric and phenotype. Univariate and multivariable logistic regression will explore association with participation/withdrawal in MND-SMART; presented as ORs and 95% CIs. ETHICS AND DISSEMINATION: Ethical approval was provided by the West of Scotland Research Ethics Committee 3 (20/WS/0067) on 12 May 2020. The results of this study will be published in a peer-reviewed journal, presented at academic conferences and disseminated to participants and the public.


Subject(s)
Amyotrophic Lateral Sclerosis , Motor Neuron Disease , Amyotrophic Lateral Sclerosis/therapy , Humans , Observational Studies as Topic , Prospective Studies , Quality of Life , Scotland
7.
Neurol Sci ; 42(8): 3415-3417, 2021 Aug.
Article in English | MEDLINE | ID: covidwho-1144352

ABSTRACT

Covid-19-associated neurological manifestations are being reported with increased frequency throughout the world. In a study from China, symptoms referable to peripheral nervous system (PNS) were described in approximately 9% of hospitalized Covid-19 patients. Common PNS symptoms reported in the study were loss of taste/smell and muscle pains. With this communication, we expand the spectrum of PNS manifestations of Covid-19 infection by reporting an association of steroid responsive diffuse anterior horn cell disease with Covid-19 infection from a tertiary care centre in India. Neurological manifestations of Covid-19 are diverse, and our case which to best of my knowledge is the first case in literature to report an occurrence of steroid responsive diffuse anterior horn cell disease associated with Covid-19 infection, adds to the ever-increasing spectrum of neurological manifestations associated with this pandemic causing virus. Good response to steroid in our case serves to provide an insight into the possible pathogenesis of this manifestation and also paves the way for future therapeutic decisions related to this association.


Subject(s)
COVID-19 , Motor Neuron Disease , Nervous System Diseases , Humans , SARS-CoV-2 , Steroids/therapeutic use
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