METHODS: This study was conducted in two phases. In the first phase, we triangulated information from reviews of journal publications, documents from the Malaysian government and in-depth interviews among selected key healthcare stakeholders in Malaysia. The second phase was designed as a cross-sectional survey to estimate the number of cases and treatment coverage for rare diseases in Malaysia.
RESULTS: Malaysia has no official definition of rare disease yet but currently in the process of reviewing them for Malaysia. There are 13 rare disease specialists and a dozen medical doctors in genetic clinics around Malaysia, mainly in public health facilities. From the survey, 1,249 patients were diagnosed with rare diseases in public hospitals. Only 60% received their medications or supplements, and the rest continued with symptomatic treatment.
CONCLUSION: Generally, Malaysia has made significant progress in the management of rare diseases, but there are still opportunities for development in critical areas. Ultimately, if all healthcare providers, government, society, and politicians work together to manage rare diseases, we will see an improvement in patient outcomes.
METHODS: The anonymised online survey included 27 items about paediatric rheumatology (PR) clinical care and training programmes. The survey was piloted and then distributed via Survey-Monkey™ between March and July 2019. It was sent to existing group lists of physicians and allied health professionals (AHPs), who were involved in the care pathways and management of children with rheumatic diseases in SE ASIA/ASIAPAC.
RESULTS: Of 340 participants from 14 countries, 261 participants had been involved in PR care. The majority of the participants were general paediatricians. The main reported barriers to providing specialised multidisciplinary service were the absence or inadequacy of the provision of specialists and AHPs in addition to financial issues. Access to medicines was variable and financial constraints cited as the major obstacle to accessing biological drugs within clinical settings. The lack of a critical mass of specialist paediatric rheumatologists was the main perceived barrier to PR training.
CONCLUSIONS: There are multiple challenges to PR services in SE ASIA/ASIAPAC countries. There is need for more specialist multidisciplinary services and greater access to medicines and biological therapies. The lack of specialist paediatric rheumatologists is the main barrier for greater access to PR training.
Method: This cross-sectional study was carried out in urban areas in the Fars and Mazandaran provinces in 2016. The sample consisted of 143 and 96 family physicians, respectively, in Fars and Mazandaran provinces and was selected using the stratified random sampling method. Data were collected using a questionnaire and included both sociodemographic variables and factors assessing the family physicians' satisfaction levels. Each factor was scored based on a Likert scale from 0 to 5 points, and any satisfaction level higher than 3 out of 5 was equated with being satisfied.
Results: The overall satisfaction levels among family physicians in Fars and Mazandaran provinces were 2.77±0.53 and 3.37±0.56, respectively, revealing a statistically significant difference between provinces (p<0.001). Moreover, the mean satisfaction scores for the performances of healthcare centers, insurance companies, specialists, healthcare workers, and the population covered were 2.78±0.1, 2.54±0.9, 2.52±0.8, 4.24±0.07, and 2.96±0.8, respectively. The family physicians' levels of satisfaction were significantly correlated with population size (p=0.02, r= -0.106), and willingness to stay in an urban family physician program (p<0.001, r= +0.398).
Conclusion: This study revealed that family physicians exhibited a low level of satisfaction with the urban family physician program. Given the direct association between family physicians' satisfaction levels and retention in the program, it is expected that family physicians will no longer stay in the program, and it is likely to have subsequent executive problems.
Methods: An online survey was conducted among healthcare providers across public health clinics in Malaysia. All family medicine specialists, medical officers, nurses and assistant medical officers involved in the screening program for adult men were invited to answer a 51-item questionnaire via email or WhatsApp. The questionnaire comprised five sections: participants' socio-demographic information, current screening practices, barriers and facilitators to using the screening tool, and views on the content and format of the screening tool.
Results: A total of 231 healthcare providers from 129 health clinics participated in this survey. Among them, 37.44% perceived the implementation of the screening program as a "top-down decision." Although 37.44% found the screening tool for adult men "useful," some felt that it was "time consuming" to fill out (38.2%) and "lengthy" (28.3%). In addition, 'adult men refuse to answer' (24.1%) was cited as the most common patient-related barrier.
Conclusions: This study provided useful insights into the challenges encountered by the public healthcare providers when implementing a national screening program for men. The screening tool for adult men should be revised to make it more user-friendly. Further studies should explore the reasons why men were reluctant to participate in health screenings, thus enhancing the implementation of screening programs in primary care.