Cancer Symptom Trials prioritising future research: Results from a consumer and healthcare professional Delphi study

In a study led by Professor Meera Agar and Dr Vanessa Yenson, Cancer Symptom Trials (CST) have published their findings from an Australian/New Zealand 3-Round modified Delphi study investigating the cancer symptoms that most affect adults living with and after cancer.

The article, ‘Defining research priorities and needs in cancer symptoms for adults diagnosed with cancer: an Australian/New Zealand modified Delphi study’, was published in Supportive Care in Cancer this month.

Consensus on fatigue

Our findings highlight that fatigue is the uniting cancer symptom that consumers (defined as adults living with or after cancer and/or their carers) and healthcare professionals agree has the most impact on daily life. Our results indicate that consumers (332 respondents in Round 1) and healthcare professionals (51 respondents in Round 1) prioritise different cancer symptoms, often correlating to the type of cancer and anti-cancer treatment an individual has experienced. These findings emphasise the importance of consumer-centred care when managing cancer symptoms and the significance of the consumer voice when determining future research directions.

Other symptoms

Other cancer symptoms that consumers and healthcare professionals agreed on were bowel problems (such as constipation and diarrhoea) and bladder issues (such as difficulty with urination and incontinence). Healthcare professionals separately agreed that anxiety, loss of appetite, insomnia, neuropathic pain, memory issues, loss of muscle tone, depression and other mood problems, breathlessness, sensory neuropathy, and drowsiness impacted their cancer patient population and better management strategies should be researched further.
Interventions

Consumers and healthcare professionals nominated interventions to manage cancer symptoms and voted for the following candidates as worthy clinical research topics: medicinal cannabis, physical activity, psychological therapies, non-opioid interventions for pain, opioids for breathlessness and cough, and other medicines.

Future research

Our research indicates that symptoms and interventions that reached agreement with consumers and/or healthcare professionals provide a compelling launching point for future research to improve cancer symptom management.

In response to the study findings, CST is running a free, online ‘Facing Fatigue Seminar Series’ from July 2023 – June 2024. Building on the momentum of this research, the seminar series aims to build research and clinician capacity to better manage fatigue for people living with and after cancer.

Professor Meera Agar is a Professor of Palliative Medicine and the CST Chair. Dr Vanessa Yenson, CST Research Assistant-Writer is the lead author of the publication. As a cancer survivor herself, Vanessa understands the impact of these results and supports the need for better management strategies for under-research cancer symptoms such as fatigue.

You can keep up to date with our research by becoming a CST member. The membership application is online and only takes a few minutes.

Acknowledgments

We would like to acknowledge and thank the Australian and New Zealand Cancer Patient Organisations who promoted this study to their respective communities (in alphabetical order): Avner Pancreatic Cancer Foundation (now PanKind Australia), Beyond Five (now Head and Neck Cancer Australia), Bowel Cancer Australia, Bowel Cancer Foundation Trust (NZ), Bowel Cancer New Zealand, Brain Tumour Alliance Australia, Breast Cancer Aotearoa Coalition (NZ), Breast Cancer Network Australia (participants in this research were recruited from Breast Cancer Network Australia’s Review and Survey Group, a national, online group of Australian women living with breast cancer who are interested in receiving invitations to participate in research. We acknowledge the contribution of the women involved in the Review and Survey Group who participated in this project), Cure Brain Cancer Foundation (Australia), The Gut Foundation (NZ), Leukaemia and Blood Cancer New Zealand, Lung Foundation Australia, Melanoma and Skin Cancer Trials (Australia), Melanoma New Zealand, New Zealand Breast Cancer Foundation (now Breast Cancer Foundation NZ), Ovarian Cancer Australia, PINC & STEEL Foundation (NZ), Prostate Cancer Foundation Australia, Prostate Cancer Foundation of New Zealand, Testicular Cancer New Zealand.

We would like to acknowledge and thank the Australian and New Zealand Health Professional Organisations who promoted this study to their members (in alphabetical order): Australia and New Zealand Society of Palliative Medicine, Cancer Nurses Society of Australia, Clinical Oncology Society of Australia, Cancer Symptom Trials, New Zealand Nurses Organisation, New Zealand Society for Oncology, Palliative Care Clinical Studies Collaborative, Palliative Care Nurses Australia. 

The authors thank Belinda Butcher BSc(Hons) MBiostat PhD CMPP for medical writing assistance that was funded by UTS CST in accordance with GPP2022.

As well as being a cancer survivor and consumer advocate, Vanessa Yenson is the Cancer Symptom Trials (CST) Research Assistant-Writer. She assists clinical trial researchers to develop clinical trial protocols, generate literature reviews, and prepare grant applications and ethics submissions. She provides research, writing and editing support to help convert new study ideas into clinical trials.