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, crosssectional 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. Mostpatients 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.
Key words: Advance care planning, Palliative support services, Quality of life.
Palliative care in duchenne muscular dystrophy: A study on parents' understanding