Newly funded trial attempts to provide relief to 2,000 Victorian cancer patients
A new $1.6 million study has been announced to help Victorians with pancreatic and other upper gastrointestinal cancers gain relief from debilitating symptoms through a new model of patient monitoring and specialist nurse support. The grant, funded by the Victorian Cancer Agency, will be used by researchers at Monash Public Health and Preventive Medicine to address the needs of nearly 2,000 Victorians with these cancers each year.
Pancreatic, oesophageal and stomach cancers have a poor prognosis, with less than half surviving up to five years post-diagnosis. If diagnosed early enough patients can undergo major surgery that currently provides the only hope of cure. However, less than one third of patients are diagnosed with early stage disease.
The average life expectancy for patients with late stage disease is less than 12 months and patients often suffer multiple symptoms that worsen as the disease progresses, including pain, depression, sleeplessness, weight loss, and dietary intolerances. Symptoms cause significant suffering and distress for patients and their families, and can complicate patient treatment, causing delays or even cessation of treatment, which can have implications for disease progression.
Given the rapid disease progression, symptoms often develop or worsen between medical visits which can leave many patients with unmanaged symptoms. Management of symptoms must remain a priority even as the search for new treatments continues.
This study allows patients to frequently report their symptoms and concerns into a standardised questionnaire as they develop or worsen. Upon doing so, patients will receive immediate, tailored advice based on their responses, designed to help them manage their own symptoms. In addition to this, a cancer care nurse will monitor patient responses in real-time and play a vital role in connecting the patient into the necessary support services, including pain management, psychological support, nutrition support during the period of time between specialist appointments when they would often be left in limbo.
“People with these cancers often have to deal with a number of painful and unpleasant physical symptoms, which can in turn lead to significant distress and unresolved suffering. They need all the help they can get. We hope this innovative model will improve their access to rapid support and relief.”
A similar trial in the USA (2017) showed promising results, including an increase in survival for patients receiving chemotherapy.1
The questionnaire that will be delivered to patients is tested and standardised before use. Such questionnaires are increasingly used in healthcare research to better understand complex but important ways that ill health and healthcare affects the lives of patients. This study, an Australian first for patients with this type of cancer, is novel because the questionnaire is being delivered to patients in a clinical setting.
The collection and integration of patient-reported outcomes in clinical practice has been associated with reduced emergency department visits, as well as improved communication between the patient and their medical team, improved quality of care, and improved patient experience and quality of life. There is emerging evidence suggesting survival can also be improved by using such questionnaires in cancer treatment settings.2
This innovative model of patient monitoring and specialist nurse support will be rolled out and tested in a randomised control trial (RCT), with patients being randomly split into a group provided with nurse support, and a group that receives standard care (no nurse support). At the end of the trial, the two groups will be reviewed looking at quality of life, number of attendances at emergency departments and survival, among other measures. RCTs provide the strongest level of scientific evidence.
The model will be tested across nine Victorian cancer care centres participating in the Upper Gastrointestinal Cancer Registry, with the main trial site being hosted at The Alfred Hospital and at least one regional site. Recruitment is expected to begin in 2020 and the trial will run for two years.
1, 2. Basch E, Deal AM, Dueck AC, et al. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA 2017;318:197-8.