Lee-Anne Pedersen

Home telemedicine for paediatric palliative care

Children with life limiting conditions require intensive, complex management of the physical, psychosocial and spiritual issues that evolve for the child and their family as the focus of care moves from curative treatment to palliation. Optimal palliative care for children can be limited by the lack of health professionals with the necessary skills and experience to confidently and competently manage the care of both the child and the family. The University of Queenslands Centre for Online Health has been working closely with the Paediatric Palliative Care Service (PPCS) at the Royal Childrens Hospital (RCH) in Brisbane, Australia, to investigate the potential of telemedicine for the delivery of specialist support in the home or local community. Research conducted in Queensland has shown how telemedicine can be effectively used to link the specialist paediatric palliative care team into the home of families caring for a child receiving palliative care, regardless of their physical distance from the RCH. This qualitative report describes two case studies, each illustrating the value of home telemedicine for families at this vulnerable and distressing time. This work should provide a useful insight for other specialty disciplines contemplating home telemedicine applications.

Development of a state-wide pediatric palliative care service in Australia: referral and outcomes over two years.

BACKGROUND Pediatric palliative care is an evolving specialty that aims to improve the lives of children with a life-limiting condition. As an emerging specialty, there is much to be learned about service provision and the expected outcomes that can be achieved. Additionally, quantification of the needs for pediatric palliative care is complicated by the uncertainty of defining the population that requires care. OBJECTIVES Our aim was to define the characteristics of the population cared for by a newly formed state-wide service in Queensland, Australia, and describe the development of the service over a 24-month period. DESIGN Data on all referrals and outcomes were collected. Descriptive statistics were used to describe patterns including the variation in outcomes between children with oncology and non-oncology diagnoses. Other factors influencing the development of the service including involved health professionals and the model of the Australian health care system are also described. RESULTS Over a 24-month period, 150 patients were referred of whom 117 subsequently died. There was a wide range of diseases and ages, and significantly, 58% of children were from regional or rural locations where there are can be limited access to specialist pediatric services. The average length of service was 83 days. A variety of factors were identified as being important for providing optimal care including ensuring equity in access, timing of referral, and continuity of care. CONCLUSION The importance of a population-based approach to pediatric palliative care in a state that is geographically large and diverse like Queensland is highlighted. This article may provide valuable information to other health care providers who care for children with life-limiting illnesses.