Quality of life and challenges experienced by the surviving adults with transfusion dependent thalassaemia in Malaysia: a cross sectional study.

BACKGROUND: Improvement in medical management has enabled transfusion dependent thalassaemia (TDT) patients to survive beyond childhood, building families, and contributing to the labour force and society. Knowledge about their adult life would provide guidance on how to support their needs. This study aims to explore the general well-being of adults with TDT, their employment status and challenges. METHODS: This study recruited 450 people with TDT, aged 18 and above, of both genders through all regional Thalassaemia societies in Malaysia and from the two participating hospitals, over five months in year 2016. A self-administered questionnaire including 'Healthy Days Core Module', WHOQOL-BREF and employment measurements was used. Multiple linear regression models were fitted with associations adjusted for several potential confounders. RESULTS: A total of 196 adults with TDT responded to the survey (43.6% response rate). Almost half (45%) had comorbidities and 9% suffered multiple complications: bone-related (13%), hormonal (12%), cardiac (3%) and infections (2%), resulting in 23% seeking treatment more than twice monthly. Within a month, they suffered from at least three days with poor physical and or mental health and their normal daily activities were disrupted up to three days. 36% were jobless and 38% of those with a job were receiving salaries below RM1000. The mean WHOQOL-BREF score (mean (SD)) was: physical health 62.6 (15.5), psychological health 64.7 (15.7), social relationship 64 (15.9), environmental health 60.8 (16.7). Having days with mental issues, financial status, education level, ethnic and marital status were main factors affecting QOL scores. Open questions showed dissatisfaction with health service provision, conflicting judgement in prioritising between health and job, and poor public empathy. CONCLUSION: The adults with TDT perceived their health as good and had less unhealthy days when compared with people with other chronic diseases. However, some perceived themselves to be facing more life disruption in a rather non-supportive community and that health services do not meet their needs. Future qualitative studies are needed to focus on their perceived needs and to look for more tailored supportive approaches.

WHAT IS THE PROBLEM?: With advancements in medical care, more people with transfusion dependent thalassaemia (TDT) reached adulthood, something which was uncommon decades ago. They should have similar physical-mental capabilities as people without TDT. However, the stigma of their condition has remained and their potential capabilities have often been underestimated by the public. We need to understand their adult life in order to assist them further. WHAT DID WE DO?: We surveyed 196 TDT patients, using a set of questionnaires. We enquired of their perceptions about their health status and quality of life (QOL: physical, mental, social relationship, environment). We asked them open questions on challenges they were facing during adulthood and employment. WHAT DID WE FIND?: Some participants (45%) were found to have other medical problems and that they could be feeling unwell at least three days in a month. Participants scored above 60 out of 100 for all of the QOL aspects (a higher score denotes a better QOL). We noted some continued to lose career advancement opportunities, face discrimination and had difficulties managing their health, in a rather non-supportive community. WHAT IS OUR CONCLUSION?: People with TDTs were doing relatively well as young adults. Life challenges persist. More qualitative studies are needed to understand their challenges better and to look for more tailored supportive approaches.

The Intention and Uptake of Colorectal Cancer Screening after a Brief Health Education Program in a Malaysian Primary Care Setting: A Population-Based Study.

Colorectal cancer (CRC) is the most common cancer in men and the second most common cancer in women in Malaysia. A major challenge for CRC screening programs is to improve the screening participation rates. In Malaysia, the most critical barrier to the uptake of CRC screening is the lack of patient awareness. This study aimed to determine the intention and the uptake of CRC screening, and to explore the related motivators and barriers after raising awareness with a brief health education. METHODS: An analytical cross-sectional study was conducted in a government health clinic of Penang from March to August 2019. Asymptomatic clinic attendees aged 50-75 years who had no prior awareness of CRC screening were recruited by systematic random sampling technique. Participants first received a standardised one to one health education, followed by an interview using a standardised questionnaire to assess their CRC screening intention and the relevant motivators and barriers. A submission of a sample for immunochemical faecal occult blood test (iFOBT) was considered as an uptake of the CRC screening. RESULTS: A total of 546 participants participated in this study. The mean age of the participants was 62.8 (SD=6.36). Majority of them were females (57.3%), Chinese (78.6%), who had attained primary or higher education (92.0%) and had comorbidities (87.0%).  After a brief health education, 231 participants (42.3%) agreed to undergo iFOBT. The actual screening uptake rate in this study was 28%. Perceived benefit of the test (84.4%) was the most common motivators, while self-perceived non-vulnerability was the biggest impediment to CRC screening intention. Physicians' recommendation was the perceived most effective way in raising CRC awareness. CONCLUSION: Participants prefer physicians to provide health education. Standardised brief health education is inadequate to stimulate CRC screening adherence. Future interventions will require in-depth understanding of patients' beliefs, risk perception, and affective responses.

A Comparative Study of Respiratory Quality of Life among Firefighters, Traffic Police and Other Occupations in Malaysia.

BACKGROUND: Despite its excellent psychometric properties, St George's Respiratory Questionnaire (SGRQ) has not been previously used in measuring respiratory quality of life (RQoL) among traffic police and firefighters who are at risk of poor respiratory health by virtue of their occupations. OBJECTIVE: To assess and compare the RQoL of the occupationally exposed (firefighters and traffic police) and the occupationally unexposed populations in Penang, Malaysia. METHODS: We recruited male traffic police and firefighters from 5 districts of Penang by convenient sampling during June to September 2018. Participants completed the SGRQ. Scores (symptoms, activity, impacts, total) were derived using a scoring calculator. Higher scores indicate poorer RQoL. Univariate and multivariate linear regression models were fitted to explore the relationship of the independent predictive factors with participants' RQoL. RESULTS: We recruited 706 participants---211 firefighters, 198 traffic police, and 297 from general population. Smokers had significantly higher scores than non-smokers in all SGRQ domains. Regardless of smoking status, the "occupationally exposed group" had higher symptoms score than the "occupationally unexposed group," who had higher activity and impact scores. Smoking status, comorbidity status and monthly income were significant independent predictors of SGRQ total score. CONCLUSION: In comparison with the general population, firefighters and traffic police reported poorer RQoL; smoking further deteriorated their respiratory health. There is a need to strengthen preventive health measures against occupational disease and smoking cessation among firefighters and traffic police.

Barriers to smoking cessation: a qualitative study from the perspective of primary care in Malaysia.

OBJECTIVES: This qualitative study aims to construct a model of the barriers to smoking cessation in the primary care setting. DESIGN: Individual in-depth, semistructured interviews were audio-taped, then verbatim transcribed and translated when necessary. The data were first independently coded and then collectively discussed for emergent themes using the Straussian grounded theory method. PARTICIPANTS AND SETTING: Fifty-seven current smokers were recruited from a previous smoking related study carried out in a primary care setting in Malaysia. Current smokers with at least one failed quit attempts were included. RESULTS: A five-theme model emerged from this grounded theory method. (1) Personal and lifestyle factors: participants were unable to resist the temptation to smoke; (2) Nicotine addiction: withdrawal symptoms could not be overcome; (3) Social cultural norms: participants identified accepting cigarettes from friends as a token of friendship to be problematic; (4) Misconception: perception among smokers that ability to quit was solely based on one's ability to achieve mind control, and perception that stopping smoking will harm the body and (5) Failed assisted smoking cessation: smoking cessation services were not felt to be user-friendly and were poorly understood. The themes were organised into five concentric circles based on time frame: those actionable in the short term (themes 1 and 2) and the long term (themes 3, 4, 5). CONCLUSIONS: Five themes of specific beliefs and practices prevented smokers from quitting. Clinicians need to work on these barriers, which can be guided by the recommended time frames to help patients to succeed in smoking cessation.