Improving quality of life for patients with upper gastrointestinal cancer

Ensuring the quality of life in patients with cancer is vital and is becoming more widely researched within the scientific community. Quality of life has been shown to impact psychological and physical health in numerous studies and should therefore be an important focus when providing healthcare.

Approximately 220 Australians are diagnosed with upper-gastrointestinal cancer each week with only 10.7% of those diagnosed surviving the following five years. As these are some of the deadliest cancers, it is important to create a positive treatment experience that maintains a good quality of life for those patients, and takes their own goals into account.

PROpatient is a registry-based clinical trial aiming to improve the quality of life for patients with upper gastrointestinal cancer through patient-reported outcomes, symptom monitoring and care coordination. The registry-based randomised control trial is part of the Upper Gastrointestinal Cancer Registry within the School of Public Health and Preventive Medicine. Researchers hope the results will present an improvement in quality of life, but also reduced health service use and emergency department visits, lower level of information needs, timely referral to palliative care services and increased median survival.

Participants are newly diagnosed pancreatic, oesophageal and gastric cancer patients within hospitals involved with the Upper Gastrointestinal Cancer Registry. These patients are split into two groups, with one undergoing the PROpatient intervention, and the control group provided with the standard care. Both groups complete questionnaires to assess their quality of life at 3 months, 6 months and 12 months after recruitment.

The PROpatient intervention allows patients to be more involved in their own treatment by reporting their symptoms through an online questionnaire fortnightly. The questionnaire involves a series of symptom-based questions, where the patient is to indicate a number on a scale from 0-10.

Patients who report severe or worsening symptoms are flagged and contacted by a cancer care coordinator who will then refer them to the relevant services or professionals. Other patients who reported mild or moderate symptoms, are sent self-management guides. These reports can be accessed by the treating clinician in real time, allowing the doctor to be consistently informed on their patient’s condition, ensuring they receive the best care, as quickly as required.

Patients are usually minimally involved in their treatment and are largely unaware of the services available to them during their time in hospital. PROpatient hopes that the heightened involvement of patients in their treatment, their knowledge of the available amenities, and better symptom monitoring, will allow patients to be more conscious of their condition, have less of a need to access emergency services, and therefore improve their quality of life during their stay.

“Past research suggests that many people with oesophageal, stomach and pancreatic cancers have many unmet needs. This is because they may not have access to information and services they need for a number of reasons. PROpatient hopes to identify each patient’s needs, provide them with real-time information specific to their circumstances and make services more accessible.” said Project Manager at PROpatient Tjuntu Muhlen-Schulte.

“Engaging with a patient about how they are feeling is just as important as monitoring their clinical outcomes and has a huge impact on the patient’s overall wellbeing.”


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