Supporting family caregivers of patients with motor neurone disease

BackgroundAssessing caregivers’ needs is fast becoming a key instrument preventing carers’ crises, particularly when caring for patients with Motor Neurone Disease (Flemming, et al., 2020). Investigating factors contributing to carers breakdown in families living with and caring for people with Motor Neurone disease (MND) is a continuing concern within healthcare, particularly with current reduction in carers’ support services since the start of the COVID-19 pandemic (Carers UK, 2021).AimsThis quality improvement project aims to improve early recognition of fatigue in family caregivers of patients with MND by implementing an already validated carers needs assessment tool as part of routine family centred care.MethodsThe Carers Alert Thermometer [CAT] created by Edge Hill University, was piloted for a period of 8 weeks. The implementation process also included creating and developing an MND support group at the hospice every two weeks to support family care givers.ResultsDuring the project we found that staff felt more confident in using an assessment tool after the training session and that staff had a shared vision in providing support to family caregivers. A key finding of the project was that after creating and developing the MND support group, family members consistently improved their scores on how able they felt to continue providing care at the current level for the person.ConclusionEvaluation of the project showed greater patient and family caregiver satisfaction of hospice services, an increase in family caregivers’ confidence to continue to be a primary care giver and a reduction in anxiety around planning for the future.

Trust in vaccines . . . and other stories

Vitamin D in older adults with covid-19 On the subject of covid-19, a randomised controlled trial from seven centres in France compared outcomes among older adults given high (400 000 IU) or standard (50 000 IU) doses of oral cholecalciferol within 72 hours of a diagnosis. Ultraviolet radiation and risk of cancer Although exposure to ultraviolet (UV) radiation is a major risk factor for melanoma, sunlight increases vitamin D levels, which might protect against other types of cancer. Stratified by cumulative average exposure to UV radiation, increasing levels of exposure carried a greater risk not only of melanoma but also of non-cutaneous cancers (Am J Epidemiol doi:10.1093/aje/kwac101).

Experiences of people living with motor neurone disease and their families during the COVID-19 pandemic in the UK: informing care by a rapid dissemination of early findings

BackgroundMotor Neurone Disease (MND) is a progressive, fatal neurological condition that leads to complex and variable difficulties for people living with MND (plwMND) and their families. Health and Social Care providers in the UK had to rapidly change the way they work and deliver care during the COVID-19 pandemic, but the experience and impact on plwMND and their families during this time is currently unknown. This study aims to explore the experiences for plwMND and their families and disseminate early findings to inform care delivery.MethodA simple mixed method design using an online data collection tool, Joint Information Systems Committee (JISC) and purposive snowball sampling were employed following ethical approval in August 2021 (SHFEC2021–086) to allow plwMND and their families to express their experiences during the COVID-19 pandemic. Descriptive statistical analysis of quantitative data and reflexive thematic analysis of narratives using NVIVO illustrates key early themes.ResultsTwenty plwMND and 14 family carers have participated so far, giving rich accounts of their experiences during the pandemic. The challenges encountered by plwMND and families during the COVID-19 pandemic in the UK are explored. The main problems described occurred in the first and/or second wave, but some issues are described as ongoing. Communication needs assessment and virtual appointments are key themes. Family members also mentioned respiratory care, comfort care and financial issues. Family members who experienced bereavement during the pandemic described the support received as ‘poor’ or ‘very poor’ and only one family member so far was positive about the end-of-life care. Both groups mentioned lack of in-person care and isolation. Views on virtual appointments with clinicians are mixed.ConclusionMND care in the UK has been impacted negatively by the COVID-19 pandemic. Dissemination of these early findings aims to inform future care delivery during ongoing and subsequent waves.FundingA small grant from the Burdett Trust for Nursing.

Perceptions of people with motor neurone disease, families and health and social care providers pre and during the COVID-19 pandemic – a rapid review of the international and UK literature

BackgroundMotor Neurone Disease (MND) or Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive terminal neuro-degenerative disease caused by degeneration of the upper and lower motor neurones in the central nervous system of the brain. The effects of MND are multifaceted, leading to many adjustments in everyday life. COVID-19 has changed how care is delivered to people with MND and this literature review aims to explore and compare experiences prior and during the pandemic.MethodA comprehensive search of the literature between 2010–2021 in all major health care databases and websites resulted in 61 papers selected for review, with 4 of these relating to COVID-19. Preferred Reporting Items for Systematic Reviews and Meta- Analysis (PRISMA) guidelines were followed. Studies were quality assessed and data extraction techniques were informed by Hawker et al’s (2002) three stages of assessment of relevance for review questions based on inclusion criteria;data extraction and scoring for methodological rigor. Themes were developed using Thematic Analysis.FindingsKey themes in the pre-COVID-19 literature were perceptions of a lack of knowledge and educational needs for staff;delayed diagnosis;communication problems, high levels of burden for people with MND and family carers, and perceptions of poor standards of care. The literature on MND experiences during the COVID-19 pandemic is limited but indicates that professionals found the delivery of high-quality care challenging. Restrictions to face-to-face services and virtual care was disruptive to usual treatment and supportive care especially during the early waves of the COVID-19 pandemic.ConclusionCOVID-19 has impacted on MND care and service delivery, but there is currently a lack of research exploring the impact of this from the perspective of people with MND and their families. Further research is required to explore include care of pwMND and their families during the COVID-19 pandemic. Keywords Amyotrophic Lateral Sclerosis, ALS, Motor Neurone Disease, MND, Perceptions, COVID-19, Integrated Approach, Multi-Disciplinary Team/MDT, Health Care Collaboration, Health and Social Care Professionals, terminally ill, Palliative Care, Hospice and Palliative Care Nursing, Home Care.

Perceptions of people with motor neurone disease, families and HSCPs: a literature review.

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.

Innovation and invention: the role of virtual occupational therapy in the management of motor neurone disease

Background: Motor neurone disease (MND) is a progressive neurological condition with no known cure. Supportive management and symptom control by a multidisciplinary team forms the mainstay of treatment. Caring for patients with MND throughout the COVID-19 required service providers to think of ways to adapt the service in order to meet the acute and constantly changing needs of their service users within pandemic guidelines. Aims: This paper explores innovative changes within the occupational therapy service provision during the pandemic and how it supports the multidisciplinary team (MDT) working. It also evaluates the merits and disadvantages of using virtual technology in specific areas of occupational therapy intervention. Methods: A set of prioritisation criteria was developed to understand the rationale for virtual versus face-to-face input. A reflective process has been used to identify and evaluate innovative service provision in occupational therapy in the management of motor neurone disease. Findings: Virtual consultations were an effective way of providing certain aspects of occupational therapy input. Virtual consultations were found to be less effective during moving and handling assessments, complex environmental adaptations assessment and when managing complex cognitive presentations. During the pandemic there was a rise in referrals for cognitive behavioural management, a specialist area of expertise for occupational therapy in this clinical area. A holistic approach was paramount in meeting the evolving needs of patients across functional domains. Occupational therapy complemented the caring and supportive role of nurses and other members of the MDT in the management of MND. Conclusions: Occupational therapy input can support an MDT by providing valuable assessment of functional decline, specialist equipment, supporting cognitive-behavioural performance, restoring life roles and minimising the challenges imposed by the environment. Using virtual technology discernibly can be an invaluable approach to occupational therapy practice within an MDT setting for managing a progressive neurological condition, such as MND, during a pandemic.

A survey on patients' disease perception and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis in Malaysia.

Aim: To investigate the patients' perception of their disease, its management and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis (ALS) in Malaysia. Patients & methods: An online survey comprising 42 questions was conducted on ALS patients during the peak of the COVID-19 pandemic. Results: Responses were received from 37/60 (62%) participants with ALS directly or through their caregivers. During the COVID-19 pandemic, two-thirds of patients were negatively impacted by the sudden disruption to their hospital appointments, rehabilitation sessions and reduced social interactions. Conclusion: This study provided insight into patients' perception of their care and management of ALS in Malaysia which will facilitate in implementing changes that can improve care to persons living with this devastating illness.

Presentation of motor neuron disease in a patient with weight loss and acute-on-chronic respiratory failure.

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.

Prospective observational cohort study of factors influencing trial participation in people with motor neuron disease (FIT-participation-MND): a protocol.

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.