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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.

ContextThere has been increasing evidence of the role of mindfulness-based interventions in improving various health conditions. However, the evidence for the use of mindfulness in the palliative care setting is still lacking.ObjectivesThe objective of our study was to determine the efficacy of a single session of 20 min mindful breathing in alleviating multiple symptoms in palliative care.MethodsAdult palliative care in patients with at least one symptom scoring ≥5/10 based on the Edmonton Symptom Assessment Scale (ESAS) were recruited from September 2018 to December 2018. Recruited patients were randomly assigned to either 20 min mindful breathing and standard care or standard care alone.ResultsForty patients were randomly assigned to standard care plus a 20 min mindful breathing session (n=20) or standard care alone (n=20). There was statistically significant reduction of total ESAS score in the mindful breathing group compared with the control group at minute 20 (U=98, n 1 = n 2 = 20, mean rank 1 = 15.4, mean rank 2 = 25.6, median reduction 1 = 6.5, median reduction 2 = 1.5, z=−2.763, r=0.3, p=0.005).ConclusionOur results provided evidence that a single session of 20 min mindful breathing was effective in reducing multiple symptoms rapidly for palliative care patients.

To palliate suffering, understanding the circumstances leading to suffering and its amelioration could be helpful. Our study aimed to explore contributing and relieving factors of suffering in palliative care. Adult palliative care stage III or IV cancer in-patients were recruited from University of Malaya Medical Centre. Participants recorded their overall suffering score from 0 to 10 three times daily, followed by descriptions of their contributing and relieving factors. Factors of suffering were thematically analysed with NVIVO. Descriptive data were analysed with SPSS. 108 patients participated. The most common contributing factor of suffering was health factor (96.3%), followed by healthcare factor (78.7%), psychological factor (63.0%) and community factor (20.4%). The most common relieving factor was health factor (88.9%), followed by psychological factor (78.7%), community factor (75.9%) and healthcare factor (70.4%). Self-reported assessment of suffering offers a rapid approach to detect bothering issues that require immediate attention and further in-depth exploration.

Percutaneous endoscopic gastrostomy (PEG) placement is recommended in patients with amyotrophic lateral sclerosis (ALS), but the procedure is considered high risk. In this study, we aimed to compare the outcome of ALS patients with and without PEG. The success of the procedure and complications of PEG insertion were also explored.Patients with ALS who met the criteria for enteral feeding support were consecutively recruited. Patients who consented had PEG insertion using the modified technique of introducer method with transoral ultra-slim endoscopy.A total of 64 patients were recruited, of which 36 (56%) patients consented to PEG. The median age of all patients was 65 years and 59% were male. There was no difference in demographic and clinical characteristics between patients who agreed to a PEG and those who did not. The mortality rate at 6 and 12 months was lower in the PEG cohort compared with non-PEG, but this was not statistically significant (6 months: 28.6% vs 32.2%, P = 0.561; 12 months: 38.9% vs 50.0%, P = 0.374). Amongst the PEG cohort, 61% were stratified high risk and 31% moderate risk. Thirty-one percent of them required long-term home noninvasive ventilation. All patients (100%) underwent successful PEG insertion at single attempt using the modified approach. The complications reported over a period of 6 months were infected PEG site (17%), dislodged gastrostomy tube (14%), and minor bleeding (8%).In ALS patients with moderate to high risk of PEG insertion, the introducer technique utilizing ultra-slim endoscopy guidance was well tolerated and safe.

Objective: To compare two ALS staging systems, King’s clinical staging and Milano-Torino (MiToS) functional staging, using prospective data from a multi-ethnic cohort of ALS patients. Methods: The ...

Objective Suffering is a common experience in palliative care. In our study, we aimed to determine the effect of 5-min mindfulness of love on suffering and the spiritual quality of life of palliative care patients. Methods We conducted a parallel-group, blinded, randomized controlled study at the University of Malaya Medical Centre (UMMC), Malaysia from February 2019 to April 2019. Sixty adult palliative care patients with an overall suffering score of 4/10 or above based on the Suffering Pictogram were recruited and randomly assigned to either the 5-min mindfulness of love group (N = 30) or the 5-min supportive listening group (N = 30). Results There were statistically significant improvements in the overall suffering score (mean difference = -2.9, CI = -3.7 to -2.1, t = -7.268, p = 0.000) and the total FACIT-Sp-12 score (mean difference = 2.9, CI = 1.5 to 4.3, t = 4.124, p = 0.000) in the intervention group compared to the control group. Conclusion The results provided evidence that 5-min mindfulness of love could affect the actual state of suffering and the spiritual quality of life of palliative care patients.

Introduction. Muscle fasciculation in amyotrophic lateral sclerosis (ALS) is typically evaluated through needle electromyography. In recent years, ultrasound has been increasingly used to detect fasciculation particularly as this procedure is non-invasive. We aimed to longitudinally evaluate muscle fasciculation in ALS patients through neuromuscular ultrasound. Methods. ALS patients fulfilling the revised El-Escorial and Awaji criteria presenting to University Malaya Medical Centre were consecutively recruited. Neuromuscular ultrasound was performed at 6-monthly intervals. Two sets of 30-second recordings were obtained from three cervical region muscles (biceps brachii, brachioradialis, first dorsal interosseus) and two lumbosacral region muscles (vastus medialis, tibialis anterior). Fasciculation was considered present when there were ≥ two involuntary contractions. These findings were correlated with disease duration and the revised ALS Functional Rating Scale (ALSFRS-R). Results. A total of 40 patients were recruited. The diagnosis of ALS was definite in 42.5%, probable in 40.0% and possible in 17.5%. The mean onset age was 56.5±8.8 years. Most patients were limb-onset ALS (77.5%). The mean ALSFRS-R was 33.7±9.7 (baseline) and 28.3±11.0 (6 months). At baseline, 17/40 (42.5%) patients had fasciculations in one region, 19/40 (47.5%) in two regions while 4/40 (10.0%) had none. At 6 months, the regions affected remained unchanged in 21 (52.5%) patients. In eight (20.0%) patients, fasciculation was further detected in additional region/s. In five (12.5%) patients, fasciculation could no longer be detected. The disease duration was negatively correlated with the number of muscles with fasciculation detected (R=-0.319 p=0.045 at baseline, R=-0.361 p=0.020 at 6 months). There was, however, no correlation between ALSFRS-R and the number of muscles with fasciculation. Conclusion. Our findings support the role of neuromuscular ultrasound as a diagnostic tool in detecting fasciculation in ALS. However, its role as a prognostic biomarker remains less clear as fasciculation can be less frequently detected with progressive motor neurons loss.

Palliative care providers find meaning in their work, even though stress, burnout, and compassion fatigue can be a concern. In this study, we aimed to explore the experiences of well-being of palliative care providers in Malaysia. Data collected using semistructured interviews were thematically analyzed. Eighteen palliative care providers participated: 9 doctors and 9 nurses. Five subthemes were generated: (1) values and strengths, (2) coping and work-life balance, (3) social support and spirituality, (4) passion and satisfaction, and (5) learning, growth, and transformation. These subthemes were further categorized into 2 themes: resilience and reward. The results may inform the development of interventions in the promotion and sustenance of well-being of palliative care providers.

ObjectivesSuffering is common among patients with advanced cancer. The practice of mindfulness during patient care can potentially reduce suffering. We aimed to examine the efficacy of mindfulness-based supportive therapy (MBST) on reducing suffering in patients with advanced cancer.MethodsWe conducted a parallel-group, single-blinded, randomised controlled trial at the University of Malaya Medical Centre, Malaysia. Seventy-three patients with advanced cancer with an overall suffering score ≥4/10 based on the Suffering Pictogram were recruited and randomly assigned into either the MBST group (n=34) or the control group (n=39).ResultsThere was a statistically significant reduction in the overall suffering score in the MBST group compared with the control group (U=432.5, median1=−2.0, median2=−1.0, z=−2.645, p=0.008). There was also significant improvement in the total Hospital Anxiety and Depression Scale score (U=483.5, median1=−4.0, median2=−3.0, z=−1.994, p=0.046), and the total Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being score (U=252.0, median1=+14.5, median2=+5.0, z=−4.549, p=0.000) in the MBST group compared with the control group.ConclusionsThe results provided evidence that the practice of MBST during patient care could promote positive psychosocial outcomes.

Introduction. In Amyotrophic Lateral Sclerosis (ALS), there is progressive motor neuron degeneration leading to progressive muscle weakness. Nerve ultrasound has the potential to detect progressive nerve atrophy through the evaluation of nerve cross-sectional area (CSA). We aimed to longitudinally study the peripheral nerves CSA in ALS patients. Methods. ALS patients fulfilling the revised El-Escorial and Awaji criteria presenting to University Malaya Medical Centre were consecutively recruited. Two sets of peripheral nerve ultrasound were performed at six-month intervals, documenting the nerve CSAs at proximal and distal segments of median, ulnar, peroneal and tibial nerves. These findings were correlated with disease duration and the revised ALS Functional Rating Scale (ALSFRS-R). Results. A total of 40 patients (mean onset age 56.5± 8.8 years) were recruited. The diagnosis of ALS was definite in 42.5%, probable in 40.0% and possible in 17.5%. Most patients had limb-onset ALS (77.5%). The mean ALSFRS-R was 33.7±9.7 (baseline) and 28.3±11.0 (6 months). All ALS patients had at least one nerve segment CSA reduction on longitudinal evaluation at 6 months. Progressively smaller CSA was seen in 26/40 (65.0%) common peroneal nerves, 23/40 (57.5%) tibial nerves, 18/40 (45.0%) ulnar nerves and 17/40 (42.5%) median nerves. In 38/40 (95.0%) patients, there was a decline in the proximal:distal CSA at 6 months, suggesting proximal nerve segment atrophy. This decline was more marked in the tibial nerve compared to the median and ulnar nerves. At 6 months, the disease duration negatively correlated with median nerve CSA at elbow (R=-0.331, p=0.040) while the ALSFRS- R correlated with ulnar nerve midarm CSA (R=0.359, p=0.025). Conclusion. We detected a decline in nerve size in the majority of ALS patients at 6 months. Our findings suggest that longitudinal changes in nerve CSA may be helpful as a surrogate biomarker of progressive nerve degeneration in ALS.

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.

Informal caregivers are at risk of being overwhelmed by various sources of suffering while caring for their significant others. It is, therefore, important for caregivers to take care of themselves. In the self-care context, mindfulness has the potential to reduce caregiver suffering. We studied the effect of a single session of 20-minute mindful breathing on the perceived level of suffering, together with the changes in bispectral index score (BIS) among palliative care informal caregivers. This was a randomized controlled study conducted at the University of Malaya Medical Centre, Malaysia. Forty adult palliative care informal caregivers were recruited and randomly assigned to either 20-minute mindful breathing or 20-minute supportive listening. The changes in perceived suffering and BIS were measured preintervention and postintervention. The reduction in suffering score in the intervention group was significantly more than the control group at minute 20 ( U = 124.0, n1= n2= 20, mean rank1= 24.30, mean rank2= 16.70, z = −2.095, P = .036). The reduction in BIS in the intervention group was also significantly greater than the control group at minute 20 ( U = 19.5, n1= n2= 20, mean rank1= 29.52, mean rank2= 11.48, z = −4.900, P < .0001). Twenty minutes of mindful breathing was more efficacious than 20 minutes of supportive listening in the reduction in suffering among palliative care informal caregivers.

The present paper presents the adaptation made to yield a working 5-class steady-state visual evoked potential (SSVEP) based brain-computer interface (BCI) system for a Duchenne Muscular Dystrophy (DMD) patient. The patient was unable to use the "standard" BCI system which made use of a liquid crystal display (LCD) of a laptop screen as the visual stimulator. A detailed assessment of the patient’s electroencephalography (EEG) spectrogram suggested that he had an inherently active alpha rhythm that manifested itself regularly even when he was focusing on other stimulation frequencies. Besides, he also exhibited an extraordinarily noisy EEG spectrum which was probably caused by his uncontrollable jerking movements. To improve his BCI performance, we substituted the LCD stimulator with LEDs programmed to flicker at different frequencies and mounted on the two sides of the laptop using a custom aluminium frame. We also conducted another pre-test to identify five stimulation frequencies that the patient could use to evoke useful SSVEP responses. While there is still room for improvement, such adaptations had rendered him an acceptable level of BCI control with >60% classification accuracy. The present study can serve as a reference for researchers or clinicians that encounter similar problem especially in a clinical setting where patients showed undesirable performance dynamics.

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.

Alleviation of suffering in palliative care needs a combination of good symptom control and psychosocial care. The capacity of mindfulness to promote psychological flexibility opens up possibilities of creating a paradigm shift that can potentially change the landscape of psychosocial care. In this review, we attempt to introduce 4 methods to establish mindfulness based on ‘The Discourse on the Foundations of Mindfulness’, a core text of Theravada Buddhism, followed by a brief comparison of the concepts and practices of mindfulness in different cultures and religions in Southeast Asia. Next, 2 mindfulness-based interventions specifically designed for palliative psychosocial care – mindfulness-based supportive therapy (MBST) and mini-mindfulness meditation (MMM) are introduced. We hypothesise that mindful practices, tailored to the palliative setting, can promote positive psychosocial outcomes. Key words: End-of-life care, Mindful, Satipatthana, Spiritual care, Spirituality

Although suffering in palliative care has received increasing attention over the past decade, the psychological processes that underpin suffering remain relatively unexplored.ObjectiveTo understand the psychological processes involved in the experiencing of suffering at the end phase of life.MethodsSemistructured interviews were conducted with 20 palliative care inpatients from an academic medical centre in Kuala Lumpur, Malaysia. The transcripts were thematically analysed with NVIVO9.Results5 themes of psychological processes of suffering were generated: (1) perceptions, (2) cognitive appraisals, (3) hope and the struggles with acceptance, (4) emotions and (5) clinging. A model of suffering formation was constructed.ConclusionThe findings may inform the development of mechanism-based interventions in the palliation of suffering.

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.

Background Inner peace is a state of mind that is free from suffering. Despite facing life-limiting diseases, it is still possible for patients to experience moments of inner peace in the midst of their pain and illnesses. The authors conduct this study to find out these moments of inner peace and the various paths eading to inner peace in palliative care patients. Purpose The purpose of this study is to (1) understand the types of inner peace in palliative care patients, to (2) understand the paths leading to inner peace in palliative care patients and to (3) construct a theory of inner peace in palliative care patients. Method Grounded theory is used in gathering, synthesising, analysing and conceptualising the data to achieve the above purpose. Results Regarding the types of inner peace, the study reveals four categories: (1) physical peace, (2) psychological peace, (3) social peace and (4) spiritual peace. Regarding the paths leading to inner peace, six categories are revealed: (1) self awareness, (2) positive thought, (3) positive emotion, (4) positive behaviour, (5) positive attitude and (6) self regulation. Conclusion The former categorisation of the types of inner peace enables us to understand inner peace in a systematic manner. It helps clinician in recognising the types of inner peace in patients. The latter categorisation gives us a deeper understanding of the various paths leading to inner peace. It provides a guide in developing various mechanism-based approaches that help patients to achieve inner peace. From these two findings, the authors construct a model of inner peace that can be generalised to all patients in the field of medicine. This model of inner peace can help clinician to facilitate patients in achieving inner peace in spite of their illnesses.

Introduction University Malaya Medical Centre is the main teaching hospital of University Malaya and admitted over 45000 inpatients in 2009. Palliative care services have gradually evolved since 2002. Services are currently provided by a team of medical specialists who manage an eight bedded inpatient ward, a hospital inpatient consultation team and weekly outpatient service. Method The palliative care database was reviewed retrospectively for the year 2010–2011 and basic demographic data, types of referrals, diagnostic categories and outcomes of care were collected and compared with the National Council for Palliative Care (NCPC) Minimum Data Set (MDS) report for the year 2009-2010. Only the hospital consultation and inpatient data is presently held within the database. Results A total of 856 (new, continuing and re-referred) inpatients were seen by the palliative care service. 44% were male (n=336) and 56% were female (n=428) and there were a considerably greater proportion of patients aged 65-74 compared with the NCPC data. Among new referrals, cancer diagnoses comprised 80% of referrals (n=591) compared with 19% (n=142) non-cancer diagnoses and 10 unrecorded diagnoses (1%). Proportionally more patients with breast cancer (17.6% vs 9%), motor neuron disease (9.8% vs 2%), chronic renal problems (21.8% vs 7%) and other heart/circulatory conditions (21.8% vs 12%) were seen compared with the NCPC MDS. More than half the patients seen by the palliative care team were discharged from hospital. Discussion The data demonstrates referral patterns and potential areas for further development. The need for more accurate evidence reflecting activity levels, outcomes and quality markers will be valuable in monitoring and planning future services as well as allocating resources in order to best meet the needs of the population. Further research into the local population is yet untapped and presents a huge opportunity for further work.