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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.

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.

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.

Background Malaysia has rising dengue incidence. World Health Organization clinical practice guidelines for managing dengue have been adapted by the Ministry of Health in Malaysia, with evidence of good awareness by clinicians. However, dengue mortality has not reduced. This study aimed to explore the challenges of dengue management for Medical Officers, with a particular focus on use of clinical practice guidelines. Methods Qualitative study using six focus groups and 14 semi-structured interviews with doctors responsible for dengue management at a large tertiary hospital in Malaysia. Results Dengue was recognised as difficult to diagnose and manage. Wide awareness and use of both WHO and Ministry of Health guidelines was reported, but several limitations noted in their coverage of particular patient groups. However, the phrase ‘guidelines’ also referred to local algorithms for fluid management, which were less clinically evidence-based. Where Medical Officers were well trained in the appropriate use of evidence-based guidelines, barriers to use included: the potential for ‘following the algorithm’ to undermine junior clinicians’ claims to clinical expertise; inability to recognise the pattern of clinical progress; and lack of clinical experience. Other reported barriers to improved case management were resource constraints, poor referral practices, and insufficient awareness of the need for timely help seeking. Conclusions Awareness of clinical practice guidelines is a necessary, but not sufficient, condition for optimal dengue management. In high prevalence settings, all clinical staff would benefit from regular dengue management training which should include diagnosis, practice in monitoring disease progression and the use of clinical practice guidelines in a range of clinical contexts. Electronic supplementary material The online version of this article (10.1186/s12879-019-3680-5) contains supplementary material, which is available to authorized users.

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.

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.