DESIGN: Data were extracted from the Malaysian Thalassaemia Registry, a web-based system accessible to enrolled users through www.mytalasemia.net.my.
SETTING: The Malaysian Thalassaemia Registry data was recorded from reports obtained from 110 participating government and university hospitals in Malaysia.
PARTICIPANTS: The patients were those attending the 110 participating hospitals for thalassaemia treatment.
INTERVENTION: Data were collected from the Malaysian Thalassaemia Registry from 2007 until the fourth quarter of 2018.
PRIMARY OUTCOME MEASURE: 7984 out of 8681 patients with thalassaemia registered in the Malaysian Thalassaemia Registry were reported alive.
RESULTS: Majority of the patients were reported in the state of Sabah (22.72%); the largest age group affected was 5.0-24.9 years old (64.45%); the largest ethnic group involved was Malay (63.95%); and the major diagnosis was haemoglobin E/β-thalassaemia (34.37%). From the 7984 patients, 56.73% were on regular blood transfusions and 61.72% were on chelation therapy. A small fraction (14.23%) has undergone splenectomy, while the percentage of patients with severe iron overload (serum ferritin ≥5000 µg/L) reduced over time. However, cardiac complications are still the main cause of death in patients with thalassaemia.
CONCLUSION: Data gathered into the registry can be used to understand the progression of the disorder, to monitor iron overload management and to improve the outcomes of treatment, to enhance preventive strategies, reduce healthcare burden and improve the quality of life. Sustainability of the Malaysian Thalassaemia Registry is important for surveillance of thalassaemia management in the country and help the national health authorities to develop more effective policies.
DESIGN AND METHODS: The respondents (n=30) were conveniently recruited within 10 kilometres radius of Kuantan city. The data were obtained using semi-guided administered questionnaires, which consists of four parts: socio-demographic data, lifestyle and clinical history (Part A); attitude and awareness on dietary practice regarding urolithiasis (Part B); food frequency questionnaire on urolithiasis (Part C) and level of knowledge on urolithiasis (Part D).
RESULTS: Majority of the respondents were women (70%), Malay (83.3%), mean age of 33.97 (±9.27), married (63.3%), completed higher education level (60%), working with government sector (33.3%) and have fixed monthly income (53.3%). Some of them had hypertension (n=4), diabetes (n=1), gout (n=1) and intestinal problem (n=1). Majority (80%) claimed having no family history of urolithiasis, consumed alcohol (10%), exercise with average frequency 2-3 times/week (46.7%) and heard about urolithiasis from healthcare worker (46.7%). The respondents' awareness about urolithiasis is considered to be good [81.23 (±9.98)] but having poor knowledge score [2.70 (±1.149)]. Majority preferred wholemeal bread, white rice, chicken meat, mackerel fish, chicken egg, apple, carrot, mustard leave and fresh milk in daily intake. Lesser plain water intake than standard requirement was noticed among respondents. Seasoning powder was commonly used for seasoning.
CONCLUSIONS: Generally, the general population of Kuantan, Pahang was aware of urolithiasis disease but needed more information on dietary aspect in terms of knowledge and food choice.
METHODS: In-depth interviews were undertaken with stakeholders involved in HIV prevention, Ministry of Health, Religious Leaders and People Living with HIV, including transgender women. Thirty five participants were recruited using purposive sampling from June to December 2013 within Kuala Lumpur and surrounding vicinities. Interviews were in person, audiotaped, transcribed verbatim and used a framework analysis.
RESULTS: Five central themes emerged from the qualitative data; Perceptions of Transgender women and their place in Society; Reaching out to Transgender Women; Islamic doctrine; 'Cure', 'Correction' and finally, Stigma and Discrimination.
DISCUSSION: Islamic rulings about transgenderism were often the justification given by participants chastising transgender women, whilst there were also more progressive attitudes and room for debate. Pervasive negative attitudes and stigma and discrimination created a climate where transgender women often felt more comfortable with non-governmental organisations.
CONCLUSION: The situation of transgender women in Malaysia and HIV prevention is a highly sensitive and challenging environment for all stakeholders, given the Muslim context and current legal system. Despite this apparent impasse, there are practically achievable areas that can be improved upon to optimise HIV prevention services and the environment for transgender women in Malaysia.