Background: Around the world, different models of paediatric palliative care have responded to the unique needs of children with life shortening conditions. However, research confirming their utility and impact is still lacking. This study compared patient-related outcomes and healthcare expenditures between those who received home-based paediatric palliative care and standard care. The quality of life and caregiver burden for patients receiving home-based paediatric palliative care were also tracked over the first year of enrolment to evaluate the service's longitudinal impact.
Method: A structured impact and cost evaluation of Singapore-based HCA Hospice Care's Star PALS (Paediatric Advance Life Support) programme was conducted over a three-year period, employing both retrospective and prospective designs with two patient groups.
Results: Compared to the control group (n = 67), patients receiving home-based paediatric palliative care (n = 71) spent more time at home than in hospital in the last year of life by 52 days (OR = 52.30, 95% CI: 25.44-79.17) with at least two fewer hospital admissions (OR = 2.46, 95% CI: 0.43-4.48); and were five times more likely to have an advance care plan formulated (OR = 5.51, 95% CI: 1.55-19.67). Medical costs incurred by this group were also considerably lower (by up to 87%). Moreover, both patients' quality of life (in terms of pain and emotion), and caregiver burden showed improvement within the first year of enrolment into the programme.
Discussion: Our findings suggest that home-based paediatric palliative care brings improved resource utilization and cost-savings for both patients and healthcare providers. More importantly, the lives of patients and their caregivers have improved, with terminally ill children and their caregivers being able to spend more quality time at home at the final stretch of the disease.
Conclusions: The benefits of a community paediatric palliative care programme have been validated. Study findings can become key drivers when engaging service commissioners or even policy makers in appropriate settings.
Keywords: Caregiver burden; Costs; Effectiveness; Evaluation; Health-related quality of life; Paediatrics; Palliative care.