OBJECTIVE: This study aims to examine and contrast the perceptions of MS patients, neurologists, and palliative care physicians towards providing palliative care for patients with MS in Malaysia.
METHODS: 12 MS patients, 5 neurologists, and 5 palliative care physicians participated in this qualitative study. Each participant took part in a semi-structured interview. The interviews were transcribed verbatim, and analysed using an iterative thematic analysis approach.
RESULTS: Patients and neurologists mostly associated palliative care with the end-of-life and struggled to understand the need for palliative care in MS. Another barrier was the lack of understanding about the palliative care needs of MS patients. Palliative care physicians also identified the scarcity of resources and their lack of experience with MS as barriers. The current referral-based care pathway itself was found to be a barrier to the provision of palliative care.
CONCLUSIONS: MS patients in Malaysia face several barriers in accessing palliative care. Overcoming these barriers will require improving the shared understanding of palliative care and its role in MS. The existing care pathway also needs to be reformed to ensure that it improves access to palliative care for MS patients.
OBJECTIVE: The study seeks to develop an understanding of the needs of patients with multiple sclerosis living in Malaysia in order to generate insights and contribute to a global database of patients' experience.
METHOD: 12 patients with multiple sclerosis participated in this qualitative study and took part in a semi-structured interview. The interviews were transcribed and analysed using an iterative thematic analysis approach.
RESULTS: The experiences, challenges and needs of the patients were reported. Five themes were developed (Daily living, Financial, Emotional and psychological, Healthcare, and Family). These predominantly revolved around the struggles of coping and adapting to the symptoms and disabilities imposed by multiple sclerosis, their heavy reliance on personal finances to cope with the increased costs of living for themselves and their families, as well as the limited healthcare services and treatments available to help them to manage the physical and emotional symptoms of multiple sclerosis.
CONCLUSION: Patients with multiple sclerosis in Malaysia have complex needs that are neglected due perceived lack of importance of the disease and the poor understanding of multiple sclerosis in general. Patients rely heavily on their finances to improve their quality of life. This perpetuates health inequities and reform of the national health financing system is needed to provide patients with the healthcare and support they need.Implications for rehabilitationPatients with multiple sclerosis in Malaysia prioritize being able to cope and adapt to their disabilities in order to continue performing their activities of daily living.There is a need to increase the availability and accessibility of healthcare professionals that are experienced with the management of multiple sclerosis.Healthcare professionals need to improve their understanding of the patients' needs and what they consider to be important in order to provide therapy that is effective and relevant.Patients also require financial support to help them with the increased costs of living associated with MS as well as the costs of healthcare services such as physiotherapy and rehabilitation.
METHODS: Participants attended the workshop and completed pre- (Time 1) and post-workshop (Time 2) questionnaires consisting of validated measures exploring attitudes towards dementia and older people more broadly.
RESULTS: A total of 97 students were recruited. Attitudes towards people with dementia showed significant positive changes between Time 1 and Time 2, whereas no differences were found for attitudes towards older people.
CONCLUSIONS: As medical and pharmacy students develop theoretical knowledge, practical skills and professional attitudes during their undergraduate studies, it is important for students to also learn about the humanistic side of diseases and conditions through workshops such as the one presented here. Further research should now be conducted to consider how Dementia Detectives can be delivered to non-healthcare students and what the barriers and facilitators to wider delivery are.
METHODS AND ANALYSIS: This is a protocol for a cluster randomised controlled trial that aims to evaluate the impact of the PRIME programme on participants' clinical outcomes and explore participants' and pharmacists' views towards its implementation. This protocol describes the development of the PRIME programme and mobile app, its feasibility and implementation in community pharmacy settings. 16 pharmacies from two states in Malaysia will be randomised to the intervention arm or standard care. The study will include overweight or obese adults with pre-diabetes. During each follow-up visit at the pharmacy, intervention participants will receive in-depth counselling from pharmacists after reviewing their self-monitoring data recorded in the PRIME app. They will also receive pre-diabetes education through the app and join a peer support chatgroup. The primary clinical outcome includes changes in body weight at 6 months, while the secondary clinical outcomes include changes in blood glucose profile, lipid profile, blood pressure and adiposity measures. The sustainability of the PRIME programme will be accessed using a follow-up questionnaire, while participants' engagement with the intervention will be evaluated using attendance rate and the app data. Focus group discussions and one-to-one interviews will be conducted for process evaluation. This study will inform the impact of community pharmacists-led digital health intervention in pre-diabetes management.
ETHICS AND DISSEMINATION: This study has been registered with clinicaltrials.gov (NCT04832984) and approved by the Monash University Human Research Ethics Committee (Project ID: 27512).
TRIAL REGISTRATION NUMBER: clinicaltrials.gov (NCT04832984).
METHODS: A 2-year retrospective cohort study was employed, in which adults with a history of admission for traumatic brain injury (TBI) in 2019 and 2020 were contacted. Three hundred one individuals agreed to participate, with a median follow-up time of 30.75 months. The development of epilepsy was ascertained using a validated tool and confirmed by our neurologists during visits. Clinical psychologists assessed the patients' cognitive performance.
RESULTS: The 2-year cumulative incidence of PTE was 9.3% (95% confidence interval [CI] 5.9-12.7). The significant predictors of PTE were identified as a previous history of brain injury [hazard ratio [HR] 4.025, p = .021], and intraparenchymal hemorrhage (HR: 2.291, p = .036), after adjusting for other confounders. TBI patients with PTE performed significantly worse on the total ACE-III cognitive test (73.5 vs 87.0, p = .018), CTMT (27.5 vs 33.0, p = .044), and PSI (74.0 vs 86.0, p = .006) than TBI patients without PTE. A significantly higher percentage of individuals in the PTE group had cognitive impairment, compared to the non-PTE group based on ACE-III (53.6% vs 46.4%, p = .001) and PSI (70% vs 31.7%, p = .005) scores at 2 years post-TBI follow-up.
SIGNIFICANCE: This study emphasizes the link between TBI and PTE and the chance of developing cognitive impairment in the future. Clinicians can target interventions to prevent PTE by identifying specific predictors, which helps them make care decisions and develop therapies to improve patients' quality of life.