e-Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2021

Real-Time Symptom Monitoring: Developing a Disease-specific Patient Reported Outcomes (PROs) Tool for Patients with Upper-Gastrointestinal Cancer (#335)

Tennille Lewin 1 , Liane Ioannou 1 , Jonathan Kim 1 , Sue Evans 2 , Charles Pilgrim 1 , Kate White 3 , John Zalcberg 1 , Lisa Brady 1 , Jessy Hansen 1 , Darshini Ayton 1 , Afaf Girgis 4 , Madeleine King 3 , Ashika Maharaj 1 , Rachel Neale 5 , Jennifer Philip 6 , Claudia Rutherford 3 , Arul Earnest 1
  1. Monash University, Melbourne, VIC, Australia
  2. Victorian Cancer Registry, Melbourne, Victoria, Australia
  3. University of Sydney, Sydney, New South Wales, Australia
  4. University of New South Wales, Sydney, New South Wales, Australia
  5. QIMR Berghofer Medical Research Institute, Brisbane, Queensland, Australia
  6. University of Melbourne, Melbourne, VIC, Australia

Background

Upper gastrointestinal cancers (UGIC) are characterised by low survival, high symptom burden and overall poor health-related quality of life (HRQoL).1, 2 Using patient-reported outcome measures (PROMs) in real-time to support patients reporting their symptoms to healthcare professionals (HPs) has been shown to improve patient outcomes, including their HRQoL. There currently isn’t a patient-reported outcome (PRO) tool for use by UGIC patients to self-report their symptoms in real-time allowing for integration into their clinical care.

Aims

To use co-design methodology with patients, carers and HPs to develop a disease-specific symptom monitoring tool for patients with UGIC. The co-designed tool will be used to report real-time PROs within the intervention arm of a registry-based clinical trial.

Methods

The development of the tool occurred across multiple phases. Identified PRO items/symptoms were presented to focus groups including health professionals (clinicians, allied health and nurses) and consumers (patients and care givers) to determine their perceptions on relevance, impact and actionability of each item/symptom. Focus groups results were used to develop a questionnaire sent to patients on the UGIC registry, requiring patients to identify and rank their ten most commonly experienced PRO items/symptoms. Frequency of responses to PRO items were analysed using Stata to finalise the tool.

Results

65 UGIC-specific PROMs were presented to focus groups with 59 PRO items/symptoms extracted. Participants agreed that although each of the symptoms/items were relevant, actionable and impacted patients HRQoL, the tool’s length was burdensome for patients to complete. A total of 80 completed questionnaires were received from UGICR, the most frequently reported symptoms were included in the final tool. 

Conclusion

The study has developed a co-designed UGIC-specific PRO tool for patients to provide real-time feedback to HPs that will guide clinical care within the registry-based randomised controlled trial, PROpatient, to provide optimal care and improve HRQoL.