The Queensland Children’s Cancer Centre at the Royal Children’s Hospital Brisbane is one of the largest tertiary centres in Oceania, receiving referrals from Queensland, Northern New South Wales, Northern Territory, Papua New Guinea and the Pacific Rim.
Queensland is Australia’s second largest state geographically with a population approaching four million. Around 2.5 million people live in the South East corner, one million live in towns along the coast and the remainder are dispersed across the state in smaller rural towns.
In the late 1990s our group undertook a series of studies which highlighted very limited paediatric palliative care resources across Queensland. The need for education and training of health professionals and access to a 24 hour ‘resource person’ were considered vital by health professionals and families caring for children dying from cancer. In response to this review, the ‘Blue’ and ‘Purple’ books were written and published in 1999 and 2001. The second edition of the ‘Blue’ book, A Practical Guide to Palliative Care in Paediatric Oncology was written with an Australia wide collaboration and launched in 2010 and is in regular use by health care professionals and education facilities.
In addition, a 24 hour on call service, known as the ‘1800 number’ was established for health professionals and families across the State. The phone is manned by Clinical Liaison Nurses who are known to the families. Over 1900 calls have been made since the introduction of the “1800 number” with an average duration of 10.39 minutes. Emotional support, symptom management and practical advice were the main reasons for the calls made.
Review and Development of Telehealth
As an extension of the outreach programme and the geographical isolation of many patients, it was thought that telepaediatrics could play an important role in service delivery. In 2003, the University of Queensland’s Centre for Online Health in collaboration with the Queensland Children’s Cancer Centre began investigating the use of home telemedicine as an adjunct to the supportive care offered and a pilot study was conducted to determine the feasibility of home telemedicine support.
Eleven families participated in a feasibility and acceptability study of in-home videoconferencing in 2008. Links were made between the Royal Children’s Hospital Brisbane oncology team and families, coordinated by the Centre for Online Health.
Using Video Conferencing
A total of 25 calls were made with eleven families. Eleven of these calls included the Paediatric Oncologist and in 22 cases, a change to symptom management was effected. There was consensus that home based video conference was an acceptable method for delivering support and management. As a result, updated hardware and software as well as video-telephony within a secure network has now been integrated into care.
In 2009 the oncology palliative care service extended to form the Paediatric Palliative Care Service (PPCS) to also meet the needs of children with non-oncological life-limiting conditions. This service provides both inpatient and outpatient care across South East Queensland’s tertiary paediatric hospitals. The Centre for Online Health has been working collaboratively with the PPCS to provide services to families irrespective of geographical location. Services are delivered direct to the family home, ensuring that the support, advice and care of specialist health professionals are available with real time audio-visual communication from the hospital into the patient’s home.
With expansion of the PPCS there have been 95 tele-paediatric palliative care links with 35 different families who reside between 8 and 1,870 kilometres from the Royal Children’s Hospital in Brisbane.
A 14 year old aboriginal girl had received intensive treatment for Wilm’s Tumour over a 12 month period in Brisbane. After disease progression, a transition to palliative care was made. A video-conference was organised between the tertiary children’s hospital and regional hospital to allow for the handover of clinical details, to provide education, establish various local contacts for the family and to discuss her symptom management plan.
Her home video links occurred using the family laptop computer and a mobile broadband internet connection. She was able to videolink from a variety of locations near her home as she visited friends and relatives. A “Happy Birthday video” link occurred with doctors, nurses and allied health staff singing to a beaming 15 year old. Five video links occurred over several weeks during her palliation. The video link was also used to provide peer support, reassurance and advice with respect to symptom management to the community nurses who were home visiting.
A viable method of reaching health professionals and families
The use of telepaediatrics as a mode of service delivery to support this vulnerable group is developing within Queensland and presents a viable method of reaching both health professionals and families who require support on a statewide level. Many patients wish to be cared for in their home environment which can be burdensome for families and local health carers.
The Queensland Children’s Cancer Centre at the Royal Children’s Hospital Brisbane has developed multiple strategies to facilitate care, including; an on-call service for health care professionals and families, published guides, teleconferencing and recently in-home video telephony. These strategies are acceptable to families and health professionals and have broader application for all care parameters and geographical locations, and diagnoses beyond cancer.
Information for this article was taken from a paper that was initially presented as a poster at the 42nd Congress of the International Society of Paediatric Oncology, Boston, 2010.
The families we care for and the opportunities provided to assist in learning how to meet needs. The Sporting Chance Cancer Foundation for their generous support of the home video program. The QCCC, QPHON, Queensland Health and University of Queensland COH.
Dr Anthony Herbert is Clinical Lead and a Specialist Paediatrician working within the Paediatric Palliative Care Service at the Royal Children’s Hospital, Brisbane.