Perspectives on Palliative Care Among Duchenne Muscular Dystrophy Patients and Their Families in Singapore.

INTRODUCTION: With better medical care, patients with Duchenne muscular dystrophy (DMD) now live longer but face more complex medical and social needs. This study described the perceptions of DMD patients and their families of disease-specific palliative care services in Singapore. MATERIALS AND METHODS: A multicentre, cross-sectional study involving DMD patients and their families was carried out. Structured questionnaires were administered to them to collect data on their understanding of palliative care, health services accessed and desired by them and quality of life. RESULTS: A total of 30 pairs of DMD patients and their caregivers responded. Most patients were >13 years old (70%) and non-ambulant (86%). Most of them and their families (70%) were also not aware of palliative care and support services that were available to them in Singapore. Additionally, they perceived greater financial assistance and better transport services as resources that could better meet their care needs. The presence of scoliosis and need for ventilatory support were associated with lower quality of life in patients. CONCLUSION: There is a need to improve awareness and provision of palliative care services for DMD patients in Singapore where discussion of end-of-life care is often considered taboo. Prevention and correction of scoliosis and provision of appropriate ventilatory support may improve quality of life in DMD patients.

3rd College of paediatrics and child health lecture--the past, the present and the shape of things to come...

The growth trends of Singapore children spanning 5 decades are reviewed, based on 8 anthropometric studies from 1957 till 2002. The heights of pre-school children and school age children appear to have optimised according to their genetic potential, but the weights and body mass indices of children still appear to be increasing from 6 to 18 years for both sexes, probably as a consequence of increasing affluence. This trend is reflected in the increasing obesity prevalence in school children over the past 30 years, and the concomitant increased morbidity associated with the metabolic syndrome, necessitates further research into the causes of obesity. Barker's hypothesis first suggested that changes in the intra-uterine environment can cause fetal adaptations which persist into adulthood, and are responsible for many chronic diseases of adult life. More recently, intense research in the field of epigenetics suggests that the environment can also influence the phenotype through gene expression, through modification of DNA methylation and histones which, in turn, influences gene expression. The challenge for the future is to determine if there are clear epigenetic changes, which are responsible for the increased prevalence of childhood and adolescent obesity, and whether these changes are transmitted through generations. Unravelling these epigenetic mechanisms may be the key to the prevention of obesity and the metabolic syndrome.