ObjectiveThalassaemia is the most common inherited blood disorder in Malaysia. This study aims to report the current status of thalassaemia in Malaysia and provide a comprehensive understanding of the disease through data obtained from the Malaysian Thalassaemia Registry.DesignData were extracted from the Malaysian Thalassaemia Registry, a web-based system accessible to enrolled users through www.mytalasemia.net.my.SettingThe Malaysian Thalassaemia Registry data was recorded from reports obtained from 110 participating government and university hospitals in Malaysia.ParticipantsThe patients were those attending the 110 participating hospitals for thalassaemia treatment.InterventionData were collected from the Malaysian Thalassaemia Registry from 2007 until the fourth quarter of 2018.Primary outcome measure7984 out of 8681 patients with thalassaemia registered in the Malaysian Thalassaemia Registry were reported alive.ResultsMajority 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.ConclusionData 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.
Background: Advances in the treatment of childhood brain tumors have significantly improved survival rates. With improved survival rates, long-term treatment-related toxicities have become important, and the resulting complications can affect patients' emotion and behavior. This study aimed to 1) evaluate behavioral outcomes among survivors of childhood brain tumors, 2) compare behavioral outcomes among survivors of childhood brain tumors with survivors of childhood leukemia and healthy children, and 3) determine any demographic, disease, and/or treatment-related factors that could affect the behavioral outcomes of survivors of childhood brain tumors. Methods: A comparative cross-sectional study was conducted over a period of 1 year (June 1st, 2018-May 31st, 2019) in two tertiary referral centers in Kuala Lumpur, Malaysia. Thirty-eight survivors of childhood brain tumors aged 6 to 18 years old who had been off-treatment for at least 1 year and were in remission, 38 age-and gendermatched survivors of childhood leukemia who had been off-treatment for at least 1 year and were in remission, and 38 age-and gender-matched unrelated healthy children were recruited. The Child Behaviour Checklist (CBCL) parent report and Youth Self-Report (YSR) questionnaires were used to assess behavioral outcomes. Results: Survivors of childhood brain tumors showed statistically significantly worse behavioral outcomes than healthy children for social problems and attention problems (p < 0.05, respectively). A significantly worse outcome was found for "social problems" (p < 0.05) in survivors of childhood brain tumors compared to survivors of childhood leukemia. Significant associations were also found between physical disability, visual impairment, education level of survivors, and father's occupation and behavioral outcomes among survivors of childhood brain tumors. Conclusions: Survivors of childhood brain tumors in our center showed poor behavioral outcomes for social problems and attention problems. Thus, effective psychosocial support interventions tailored to individual patients as soon as treatment is completed are important to prevent potentially debilitating emotional problems.
This study was undertaken to determine the association of the personal factors of culture, attitude and motivation on health behavior among Malaysian adolescents. A cluster sampling technique was used and a total of 1,029 students with ages ranging from 15 to 17 years (M age = 15.9, SD = .637) were selected as respondents. The research instrument was a self-administered questionnaire covering health behavior, culture, attitude, and motivation towards health. The strongest linear relationship was found between culture and health behavior (r = .618, p = .001). Besides the culture of adolescents being the main predictor of health behavior (β = .365, p = .000), attitude (β = .283, p = .000) and motivation (β = .064, p = .033) also had significant independent effects on health behavior. Hence, culture, attitude and motivation should be taken into consideration in the promotion of health education, especially at school level. Background of the study Health behavior is a common term in health psychology and can be understood simply as behavior that influences health. Research into adolescents' health behavior and the personal factors that influence them is essential for the development of effective health education and the observation of good health. It is important that young people's health is considered in its broadest sense to encompass social, physical, and emotional well-being. Furthermore, in line with the World Health Organization's (WHO) perspective, health is viewed as a resource for everyday living, not just the absence of disease. Many behavioral patterns that reflect young people's lifestyles may directly or indirectly impact on their health in the short or long term. Certain behavior is shaped during adolescence, while some patterns of behavior, such as eating habits, become established in childhood. Taking selected personal factors as predictors to health behavior, the present study analyzed psychological, social, and environmental influences that contribute to adolescent health. According to the Youth Malaysia Index reported by Ministry of Youth and Sports, Malaysia, the level of health among the youth in Malaysia, at 65.8%, is moderate (Ministry Youth & Sport Malaysia, 2015), pointing to the need for improvement to their health behavior. Many lifelong habits that mold health behavior are formed during childhood and adolescence (Bandura, 1998). With regard to the adolescent's transition from children into adulthood, aspects of culture, motivation, and altitude may affect their future well-being. During this transition, those who have poor health habits may drop them and ARTICLE HISTORY
Purpose This study aims at investigating the relationship between the quality of working life and career engagement of cancer survivors and the mediating role of the effect of disease and treatment. Design/methodology/approach A cross-sectional study was conducted on 400 cancer survivors in Malaysia. The participants, aged between 18 and 40, were Malaysian citizens undergoing follow-up sessions at the Kuala Lumpur General Hospital and the National Cancer Institute of Malaysia. Data were analysed using descriptive statistics, Pearson’s correlation coefficient and regression analysis that implemented Baron and Kenny’s method for mediation were used for analyses. Findings The effect of treatment and disease was found to significantly mediate the relationship between quality of work-life and career engagement of cancer survivors. Research limitations/implications The instrument for this study was a self-reported questionnaire, with participants responding to specific items on a five-point Likert scale under the supervision of the researchers. As results from the survey were subjective in nature, the bias in the participants could not be eliminated completely. This study was also limited to the two main parameters, namely, quality of working life and career engagement and a mediator, namely, effects of the disease and treatment. Moreover, as the survey was conducted in only two hospitals in the Klang Valley area, the results cannot be generalized to other cancer survivors in other regions of Malaysia. Practical implications The results of this study indicated that the mediating role of the effects of disease and treatment on the relationship of the quality of working life subscales with career engagement. Practical implications, cancer survivor consciousness of the effects of disease and treatment is very important and should be addressed and could be notable to improve the quality of working life. Originality/value This study gives valuable insight to managers and practitioners by investigating the relationship between the quality of working life and career engagement and mediates by the effects of disease and treatment. The findings highlight the challenges cancer survivors face on their return to working life. The findings also highlight the need for management to take steps to help cancer survivors cope with career engagement for better work performance.
INTRODUCTION Patients with high risk medulloblastoma are treated either with high dose chemotherapy or hyperfractionated radiotherapy. Both approaches are not feasible in resource-limited countries. POG9031 trial has reported favourable outcome for high risk medulloblastoma using standard chemotherapy and radiotherapy only. Hence, we have adopted the protocol using chemotherapy first approach due to logistical reasons. OBJECTIVE To review the outcome of children diagnosed with high risk medulloblastoma in Hospital Kuala Lumpur. METHODS Patients diagnosed with high risk medulloblastoma between January 2015 and June 2018 treated using the chemotherapy first approach as per POG9031 protocol were identified. Data was then extracted and analysed. RESULTS Nine patients were identified, 3 boys and 9 girls. Median age was 9.3 years (range 2.6 – 15.9 years). Median follow up for survivors are 3.6 years. Five patients (55.6%) had macroscopic metastatic disease at diagnosis. All patients had significant residual disease post-op. Only 3 patients are disease free till last follow up, giving a 3 years event free survival of 16%. Of the 6 patients who had relapsed, 4 have died, giving a 3 years overall survival of 46%. Patients with no metastasis at diagnosis (M0) fared better with 3 years event free survival of 38%, but 3 years event free survival for patients with macroscopic metastatic disease (M+) was 0%. CONCLUSION Outcome of children with high risk medulloblastoma treated with chemotherapy first approach was dismal.
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