Psychosocial studies
Psychosocial studies of patients, parents and healthcare professionals involved in precision medicine
PRISM-Impact
The PRISM precision medicine trial uses novel technologies (e.g., genomic testing, in vitro/in vivo drug testing) to identify individualised therapies for patients with high-risk childhood cancers. The testing and analyses are complex, and patients and families might find it difficult to understand.
PRISM-Impact is a psychosocial study which aims to better understand families’ attitudes toward, and the impact of, personalised therapy in childhood cancer. We want to explore families’ and healthcare professionals’ hopes, expectations and concerns regarding the PRISM trial. We also want to analyse the psychosocial impact of, and families’ satisfaction with, having enrolled in PRISM.
How is PRISM-Impact supported?
PRISM-Impact is supported by the national precision medicine Zero Childhood Cancer Program (ZERO) for children with high-risk cancer, Luminesce Alliance – Innovation for Children’s Health. Luminesce Alliance - Innovation for Children’s Health, is a not-for-profit cooperative joint venture between the Sydney Children’s Hospitals Network, the Children’s Medical Research Institute, and the Children’s Cancer Institute and by the Behavioural Sciences Unit.
Additional information
Study recruitment is closed. Please contact PRISM-Impact@unsw.edu.au if you would like further information about PRISM-Impact.
ZERO2-Experiences
After the success of PRISM, the ZERO program has expanded into the ZERO2 trial, providing all patients diagnosed with childhood cancer in Australia, including high-risk and non-high-risk patients, access to precision medicine.
Running alongside the ZERO2 program, we lead the ZERO2 Experiences study, which is a psychosocial sub-study aiming to better understand the information and psychosocial support needs of families participating in precision medicine for childhood cancer.
Who can participate?
Patients with a childhood cancer diagnosis in Australia (aged 0-25) are eligible to enrol in the ZERO2 trial. All parents, as well as patients aged >12 years who are part of the ZERO2 trial, are eligible to participate in ZERO2 Experiences, as well as healthcare professionals caring for families participating in ZERO2.
How is ZERO2 Experiences supported?
ZERO2 Experiences is supported by the Zero Childhood Cancer Program, Synergy, LOGGIC, the Cancer Institute of NSW and by the Behavioural Sciences Unit.
Additional information
Please contact zero2-experiences@unsw.edu.au if you would like further information about ZERO2 Experiences.
Low Grade Gliomas In Children (LOGGIC)
The LOGGIC study aims to assess patient and family quality of life, including distress and psychosocial support needs/barriers among patients who are diagnosed with a Low Grade Glioma (LGG) and are enrolled in a paediatric precision medicine trial. Additionally, the study aims to explore experiences with and the impact of novel therapeutics.
LOGGIC is currently recruiting through the ZERO2 Experiences study and began recruitment in November 2022, with a planned recruitment period of 5 years.
Additional information
Please contact k.hetherington@unsw.edu.au if you would like further information about the LOGGIC study.
Together study
The Together study aims to develop and evaluate the acceptability, uptake and impact of a new model of telehealth-delivered psychological support and care navigation for parents of children participating in precision medicine. The Together study also aims to document the distress and support needs of these families, with a focus on sarcoma and other high-risk cancer diagnoses.
Who can participate?
Participants include parents (of children <21 years) and patients (12-17 years) enrolled in PRISM-Impact or ZERO2 Experiences - Australia wide.
Additional information
Please contact b.mcgill@unsw.edu.au if you would like further information about the Together study.