Defining NETs, funded by the Victorian Cancer Agency, aims to define the differences in patient experience, supportive care needs, psychological well-being and quality of life between those with functioning and non-functioning NETs.
Phase one of this study will be collecting questionnaire and clinical data from patients, newly diagnosed with a NET, over a 6-month period. In phase two of this study, this information will be then used to design, develop, and pilot test, a targeted supportive care intervention tailored to meet the specific needs of each subgroup which will be delivered through the Unicorn Foundation NET-Nurse Hotline. This study is being led by PI: Dr Lisa Guccione and chief investigators Prof Penelope Schofield, A/Prof Michael Michael, A/Prof Nick Pavlakis, Dr Mustafa Khasraw and Dr Tim Price. The study is currently recruiting at the Peter MacCallum Cancer Centre in VIC, Royal North Shore Hospital and Northern Cancer Institute in NSW, Lyell McEwin Hospital in SA, Royal Brisbane Hospital in QLD and Fiona Stanley Hospital in WA opening soon.
PARTICIPANT INCLUSION/EXCLUSION CRITERIA:
Inclusion Criteria:
• Newly diagnosed with a NET (within 6 months), classified as either functioning or non-functioning by the treating oncologist.
• Over 18 years of age
• Proficiency in English
Exclusion criteria
• Too unwell to participate in the study as determined by the study team
• Severe psychiatric or cognitive disorder
WHAT THE STUDY REQUIRES:
Consent to access medical records
Collection of clinical information
Patients to complete questionnaires at baseline and 6 months follow-up
For any further questions please contact:
Dr Lisa Guccione, PhD
Post-doctoral Research Fellow, Cancer Experiences Research
Phone +61 3 9656 5246
Email lisa.guccione@petermac.org or alexandra.murray@petermc.org