Quality of Life and Supportive Care Subcommittee




Quality of Life and Supportive Care Subcommittee





Quality of Life and Supportive Care Subcommittee

Quality of Life and Supportive Care Subcommittee


Haryana Dhillon



Natasha Roberts


We’ve seen significant productivity in our activities throughout the past year, and the subsequent report provides a detailed overview of our accomplishments. Furthermore, we extend our heartfelt appreciation to Catherine Paterson for her invaluable service as Deputy Chair over the past few years, and we warmly welcome Natasha Roberts as she assumes this role.

Consumer Advisory Panel (CAP)

In the past year, the CAP has welcomed a new member, Raewyn Manssen, and we express our gratitude to Matt Leonard for his contributions during his tenure as a CAP member.

The CAP has actively contributed insights to several grant submissions. Furthermore, the Health Literacy Hub at Sydney University trialled a new online system to improve the readability and clarity of patient information materials, some of ANZUP’s CAP members individually took part in this study.


In February 2024, a workshop was held for consumers from the cancer clinical trial groups, with a focus on reviewing PROMs in concepts. Resources to help researchers use the SPIRIT PRO tool have been added to the CQUEST website. Additionally, a workshop was held on August 7, 2023, on choosing PROMs.

CREST Update

On September 15, 2023, CREST held a consumer workshop focused on implementation of health economics evidence from clinical trials.

Trial Updates


  • Penile cancer study: Recruitment remains slow, and the study will continue for another 1-2 years. Catherine Patterson showcased the study at a VCCC meeting (for Niall Corcoran’s penile cancer registry project). Further promotion took place during rare cancer MDT meetings.
  • MM-BCG QoL analysis: Kath Schubach has published her first systematic review, and has a penultimate draft of her second systematic review on unmet care needs of people with NMIBC. The next stage of her project is to analyse baseline data from the MMC BCG trial for clinical and demographic predictors of QoL. A small subset of study participants will be interviewed to explore supportive care needs.

Germ Cell

  • QoL analyses: Information on available QoL data sets has been circulated. Haryana Dhillon and Ciara Conduit have begun the analysis.
  • Fear of cancer recurrence: PoCOG is developing a platform trial to assess fear of recurrence across multiple cancer types and provide supportive interventions.
  • Holistic supportive care intervention in Testicular Cancer: Specialist GU nurses recently surveyed believe that this cohort has fewer unmet needs than other GU cohorts. However, people treated with chemotherapy have raised alopecia as a concern, while those treated early with surgery have reported follow-up scan anxiety.
  • PREPARE: A qualitative sub-study has been published. The sub-study involved interviews with trial participants who experienced retrograde ejaculation. Only a small number of people felt that this issue had a significant impact on their lives (on identity, self-esteem, and relationships).


  • Decision-making after late PSMA-PET detected recurrence: Data from interviews has been collated, and decision making aids and resources will be developed. Haryana Dhillon will be following up with Deakin Uni researchers and Colin O’Brien regarding the AI review of online chat forums.
  • Management of hot flushes: Anthony Joshua proposed a study using the new agent fezolinetant at a PCC meeting. Haryana Dhillon supported a potential placebo-controlled study.
  • PROCOG: Recruitment has completed. The qualitative component of the study investigating the impact on cognitive function has been written up. The pilot of cognitive rehabilitation intervention will commence next.


  • Kidney Cancer Information: A consumer-led MRFF grant has been submitted to develop active surveillance resources for people with kidney cancer (OAK). Work on developing guidelines for active surveillance of small renal masses has begun while awaiting the grant outcome.
  • Unmet supportive care needs: Questions and response options for the screening tool are being revised to increase acceptability. The screening tool is also being adapted for ATSI people. A small number of sites were identified in early 2024 to begin trialling the tool. If it is feasible, then consideration will be given to adapting the tool for CALD communities.

Fellowships and Awards

Janssen Nursing Allied Health Award 2017 – How do patients experience ANZUP Clinical Trials? (Natasha Roberts)

The manuscript has been revised to capture specific time points of the clinical trials including screening, consent, on treatment and follow up.

ANZUP Nursing Allied Health Award 2017 – Economic and efficiency impact of a rapid access prostate cancer diagnostic service in WA (Cynthia Hawks)

PhD completed.