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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.

Studies from multiethnic populations are rarely reported but do indicate differences in phenotypic presentation and survival in amyotrophic lateral sclerosis (ALS). In this study, we aimed to investigate the natural history of a cohort of ALS patients from a multiethnic population. Methods: Data from ALS patients presenting to our multidisciplinary ALS clinic were prospectively collected from January 2015 to June 2020 as part of an ongoing hospital-based patient registry. Kaplan–Meier and Cox regression model were performed to identify potential prognostic factors. Results: A total of 144 ALS patients were recruited. We estimated the crude ALS incidence as 0.53 per 100,000 for 2019 but rises to 2 per 100,000 in patients aged 60–74 years. The majority of patients were of Chinese ethnicity (59.7%), followed by Malay (24.3%), Indian (11.1%), and others (4.9%). Malaysian Indians had a significantly steeper ALSFRS-R slope at diagnosis (p = 0.040). We found a worse prognosis in patients with bulbar-onset (HR = 1.915, p = 0.019), older age (HR = 1.052, p = 0.000), and who were fast-progressors (HR = 1.274, p = 0.000). In contrast, a higher body mass index (HR = 0.921, p = 0.007) and a longer time to diagnosis (HR = 0.967, p = 0.006), noninvasive ventilation (HR = 0.820, p = 0.000) and percutaneous endoscopic gastrostomy insertion (HR = 0.823, p = 0.000) were associated with better survival. On multivariate analysis, diagnostic delay and slow disease progression were associated with better survival. Conclusions: In our cohort, diagnostic delay and a slow disease progression were significantly associated with better survival in ALS. We also found ethnic variation with Chinese preponderance and more rapid disease progression in patients of Indian descent.

ContextNumerous studies have shown that gratitude can reduce stress and improve quality of life.ObjectiveOur study aimed to examine the effect of mindful gratitude journaling on suffering, psychological distress and quality of life of patients with advanced cancer.MethodsWe conducted a parallel-group, blinded, randomised controlled trial at the University of Malaya Medical Centre, Malaysia. Ninety-two adult patients with advanced cancer, and an overall suffering score ≥4/10 based on the Suffering Pictogram were recruited and randomly assigned to either a mindful gratitude journaling group (N=49) or a routine journaling group (N=43).ResultsAfter 1 week, there were significant reductions in the overall suffering score from the baseline in both the intervention group (mean difference in overall suffering score=−2.0, 95% CI=−2.7 to −1.4, t=−6.125, p=0.000) and the control group (mean difference in overall suffering score=−1.6, 95% CI=−2.3 to −0.8, t=−4.106, p=0.037). There were also significant improvements in the total Hospital Anxiety and Depression Scale score (mean difference=−3.4, 95% CI=−5.3 to −1.5, t=−3.525, p=0.000) and the total Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being score (mean difference=7.3, 95% CI=1.5 to 13.1, t=2.460, p=0.014) in the intervention group after 7 days, but not in the control group.ConclusionThe results provide evidence that 7 days of mindful gratitude journaling could positively affect the state of suffering, psychological distress and quality of life of patients with advanced cancer.Trial registration numberThe trial was registered with the Australian and New Zealand Clinical Trials Registry (ACTRN1261800172191) and conducted in accordance with the Declaration of Helsinki.

Background Informal (unpaid) caregivers provide care that goes beyond customary and normative support, and endure ‘silent suffering’ often unrecognised by healthcare providers. Understanding factors that contribute to the wellbeing of informal caregivers can further the capacity of healthcare workers to promote caregivers’ wellbeing. Methods We performed a qualitative study of semi-structured face-to-face interviews in Malaysia. Transcripts were read repeatedly for familiarisation, followed by coding and thematic analysis. NVivo11 software was used to analyse data. Results The five main themes shown to promote the wellbeing of informal caregivers are: acceptance, appreciation, hope, happiness and support. Finding acceptance mirrors the seven stages of grief – shock, denial, anger, bargaining, depression, testing and acceptance – and seems to be born out of having no other choice. This lack of choice is rationalised in three non–mutually exclusive ways: understanding that death is an inevitability of life, trust in the sovereignty of a higher power or god, and seeing death as the ultimate freedom from suffering. Caregivers were appreciative of healthcare providers, the time they had with their loved ones, the opportunity to give back to their loved ones, and were also grateful to god. Of note, skills traditionally seen as ‘soft’ by medical practitioners, were most appreciated – professionalism, providing education, responsiveness to requests and humanity. The hope seen in preserving wellbeing is built on having accepted their situation and shapes hope for realistic goals. Without acceptance, unrealistic hope would only frustrate and be detrimental to their wellbeing. Happiness is protective against negative rumination and is derived from the patients themselves, relationships and moments of respite. Support systems comprised spiritual or religious groups, family and friends, each catering to slightly different needs. Conclusion Awareness of these five factors that promote caregiver wellbeing should inform clinical practice and holistic care.

Background Current treatments for thin, watery hypersalivation in MND include conservative methods, anti-muscarinics, and Botulinum toxin injection or radiotherapy of the salivary glands (Young, Ellis, Johnson, Sathasivam, & Pih, 2011). Objective To report a case of sialorrhea in an MND patient in whom conventional treatment options were not helpful or tolerated. Morphine was trialled and found to reduce symptoms. Results W is a 42-year-old gentleman who was diagnosed with MND in 2013 needing BiPAP ventilation by January 2015. In February 2016, W presented with sialorrhea, and was started on 12.5 mg Amitriptyline once nightly. However, he developed daytime somnolence, without significant symptom improvements and was switched to Benzhexol (Artane), 2 mg/day in March. W was also trialled on Oramorph 2–4 mg PRN as an adjunct to Benzhexol, which he took about twice daily. In August 2016, W presented with increased mucus plugging of his lower respiratory tract, intolerably dry oral mucosa, and thick oral secretions that became stuck at the back of his throat. Benzhexol was stopped and W underwent one session of radiotherapy. This only reduced his sialorrhea for 2 weeks, after which W developed salivary flooding every 1–2 hours. Morphine was then delivered via a continuous subcutaneous infusion (CSCI) 20 mg/24 hours, which improved W’s symptoms and alleviated salivary flooding. As the MND progressed, W developed an ineffective cough and was unable to clear thick lower respiratory tract secretions. A cough assist machine was introduced. W is currently on 25 mcg Fentanyl Patch (72 hourly) and a cough assist machine. W does not report any problems with daytime drowsiness, excessively dry oral mucosa, salivary flooding or thick secretions in the upper or lower respiratory tract. Conclusion We propose that opioids have a measure of anticholinergic effects, which when used as an adjunct with existing therapies for MND, address the balance between excessive watery secretions and thick mucus plugging.