Newcastle Cancer Control Collaborative (New-3C), NSW

Improving and maintaining holistic cancer survivor outcomes

New-3C has recently celebrated the award of a five year Cancer Council NSW program grant to undertake translational research across the cancer trajectory, from diagnosis to end of life care. The research will be undertaken by an experienced, multi-disciplinary team. The program has a strong focus on building capacity of early-mid career researchers and meaningful engagement of consumers in research development.

Cancer survivors face a myriad of challenges to their physical, emotional and social wellbeing from diagnosis through to the end of life. Research has highlighted a gap between what occurs and what should occur in relation to the care of survivors. For example, cancer care providers do not always recognise or manage the survivors’ physical, emotional and social concerns. Many survivors are not involved in decisions about their care, and do not receive enough information about their disease, prognosis and treatment. Previous research has focused on trying to change the behaviour of survivors and individual cancer care providers in order to improve the quality of care received by survivors and their psychosocial wellbeing. However, this work has not achieved the desired improvements. If all survivors are to receive high quality care that meets their needs, we must modify the system in which care is provided.

This program will determine the effectiveness and cost effectiveness of a multi-faceted, system-based intervention in improving cancer survivors’ levels of anxiety, depression, unmet needs and quality of life. Adult cancer survivors will be recruited from participating medical oncology outpatient units during the study period. Survivors attending their outpatient clinic appointment will be asked, by a trained research assistant, to complete an electronic survey while they wait to attend their clinic appointment. Each oncology unit will receive a 12-month system-based intervention, designed to improve the delivery of high-quality patient centred care. The intervention includes: quality assurance working parties of consumers, cancer care providers and hospital administrators at each oncology unit; a pre-intervention workshop at each unit, which will involve setting goals, identifying factors that might prevent best-practice care, and training staff on how to provide the best psychosocial care possible; web-based resources (one for staff and one for survivors) providing information and support; and monthly feedback reports of the unit’s performance using the data collected from survivor surveys. The impact of the intervention on anxiety, depression, unmet needs and quality of life outcomes will be examined. Quality of care will be assessed across 12 domains: treatment decision making; continuity of care; preparation for potentially threatening procedures; prognosis disclosure; psychological screening; self-management and follow-up; end-of-life care planning; palliative care; communication and information provision; involvement of supportive others; financial impact of cancer; and peer support. If successful, the intervention could be applied to clinics across Australia. The study acknowledges the need for a holistic, patient-centred approach to care that addresses the issues that are important to survivors from diagnosis to end-of-life, with the potential to result in immediate benefits for survivors.

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