Introduction The Queensland Children’s Cancer Centre (QCCC) of the Royal Children’s Hospital (RCH) in Brisbane, cares for children and family members from across the state covering over of 1.7 million km2 and a population of more than 3.6 million inhabitants. Around sixty percent of families accessing QCCC services live outside the Brisbane metropolitan area at distances ranging from hundreds to thousands of kilometres away. Telephone communication is used to provide specialist care and support to families directly to the home. Telephone communication is also used by families to maintain intra-family psychosocial care and support during treatment related separation. Although the feasibility of using online support mechanisms such as videotelephony (full-duplex, real-time audiovisual communication) has been investigated in a number of areas, no investigations have been reported in the area of paediatric oncology care and support. Scope Initial investigations focused on paediatric oncology related palliative care, a subgroup of paediatric oncology families with high care and support needs. Following continued difficulties with family recruitment in the area of palliative care, two additional areas where support via videotelephone may be of benefit were identified by clinicians: facilitation of intra-family support during paediatric related inpatient admission and new diagnosis discharge support. Investigations were expanded to include these areas. Methods Two custom made videotelephone units were developed to provide audio-visual communication using the ordinary home telephone line for early investigations. Improvements in the mechanism to provide video to the home were evaluated throughout investigations (in terms of technical feasibility and cost) moving from dedicated dial-up systems to use of the families existing home computer and broadband Internet connectivity. Feasibility studies were completed with one or more patients/families to confirm that videotelephony could be used successfully within the given area of paediatric oncology. To investigate cost-effectiveness, studies were designed to evaluate the cost and the effect of videotelephony support. The primary measure of clinical effectiveness was parental mental-health related quality of life. For analysis of cost-effectiveness, parental quality adjusted life years (QALYs) were used to investigate the incremental cost per QALY. Results The feasibility of providing videotelephone based support was confirmed in paediatric oncology related palliative care with a single family. Despite a number of attempts, a randomised controlled trial with palliative care families was terminated prematurely after continuing problems with recruitment. Based on the experience in this trial, the acceptability of providing support to paediatric oncology related palliative care families using videotelephony was then evaluated. All families were offered videotelephony as part of the routine services provided by the QCCC over a 12-month period. Consent to participate was taken as a proxy measure of acceptability. Consent from 92% of families offered the service provided some reassurance that videotelephone based support was acceptable to these families. The average cost of the service, including fixed equipment and infrastructure costs, was $3,830 per family with a variable cost of $66 per family. Feasibility was also confirmed for the facilitation of intra-family support during inpatient admission, again with a single bone marrow transplant family. A small (n=16) randomised controlled study was then completed in the area of intra-family support with paediatric bone marrow transplant families. Preliminary evidence of effectiveness was obtained with improved mental health related quality of life of parents with a mean improvement of 6.3 points using the Mental Component Summary Score (MCS-12) of the Medical Outcomes Survey Short Form (SF-12) (95% CI: 0.6 to 12.0, p=0.030). No effect was seen for patients or siblings. On an intention-to-treat basis the incremental cost effectiveness ratio (ICER) using univariate analysis was $12,757/QALY (Fieller’s 95% CI: $6,792 to $64,548) with a 92.5% probability that supplemental videotelephone support was cost-effective compared to standard support mechanisms alone at a willingness-to-pay threshold of $30,000/QALY. ICER results using multivariable analysis were $26,623 (Fieller’s 95% CI: $10,475 to 177,921) and probability of 58.0% at the same willingness to pay threshold. Despite some uncertainty in the cost-effectiveness of this type of intervention, preliminary results support the appropriateness of further investigations in this area. For the final area of investigation, new diagnosis discharge support, a pilot trial (n=8) was completed which confirmed the feasibility of providing videotelephone based support at this time in the treatment pathway. In addition, a cost-minimisation analysis was completed to evaluate the cost of providing real-time audio-visual communication to the home using a newly developed videotelephone alternative (a webcam and software used on the family home PC and Internet connection) rather than the custom made videotelephone units initially developed. With an average cost of $294 per family for the home computer option versus $1,345 for the original custom made videotelephone option, the economic benefits of the newly developed alternative were confirmed. Conclusion Feasibility has been confirmed in all three areas investigated, paediatric oncology related palliative care, intra-family support and discharge support. For the facilitation of intra-family support during inpatient admission, preliminary evidence indicates that the addition of videotelephony support, as a supplement to standard support mechanisms, may be cost-effective. Based on this result, further research in this area appears justifiable. It is also feasible to conduct a larger trial in the area of discharge support which should provide important information on the cost-effectiveness of videotelephony services provided at this time. The results of these investigations, combined with an increased understanding and insight into the role videotelephone support can play in paediatric oncology, provide the basis for the development of a potentially cost-effective model for improving the care and support provided by children’s cancer services in Australia using videotelephony. This model spans the spectrum of paediatric oncology care from diagnosis, through outpatient care, to discharge home (either for palliative care or remission care) specifically with geographically dispersed populations in mind. To provide further evidence of cost-effectiveness in paediatric oncology more broadly, future research will need to focus initially on three areas. The first area is preliminary investigations, this essentially includes consideration of the potential economic impact of proposed services before investment in further research and development. For paediatric oncology videotelephone support preliminary research includes the potential for videotelephony in paediatric oncology outpatient care, specifically the number of consultations that could potentially be replaced and the associated economic implications. Preliminary investigations will also need to include quantification of the burden of out-of-pocket telecommunications expenses for paediatric oncology families of the QCCC and the potential economic implications of supplemental videotelephone intra-family support extended beyond paediatric bone marrow transplant families. The second area is clinical feasibility including studies into the practical inclusion of videotelephony support in existing out-patient workloads and workflows, alternative models to provide videotelephony support and inclusion of videotelephony as part of palliative bereavement care and support. Finally, the completion of large, well-designed randomised controlled trials will be required to provide evidence of the cost-effectiveness of videotelephony support in paediatric oncology. The investigations presented in this thesis form the foundation for this work and its application to the delivery of health services to the home in a variety of contexts nationally and internationally.
| Identifer | oai:union.ndltd.org:ADTP/279265 |
| Creators | Mark Eliot Bensink |
| Source Sets | Australiasian Digital Theses Program |
| Detected Language | English |
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