Quality of Life and Supportive Care Subcommittee
ANNUAL
REPORT 2023
Quality of Life and Supportive Care Subcommittee
ANNUAL
REPORT 2023
Quality of Life and Supportive Care Subcommittee
ANNUAL
REPORT 2023
Quality of Life and Supportive Care Subcommittee: Haryana Dhillon and Catherine Paterson
Haryana Dhillon
CHAIR
Catherine Paterson
DEPUTY CHAIR
Our activities have been productive over the past year, and the following report details them.
Consumer Advisory Panel (CAP)
The CAP has welcomed two new members, Tuan Hoang and Paul Zawa (prostate cancer/testicular cancer backgrounds) in the past year.
The CAP was very involved in the Community Engagement Forum, held in Adelaide in July 2022. CAP members also attended the Idea Generation Workshops (IGWs) throughout the year. ANZUP is working on more user-friendly patient information materials for future studies, in consultation with the CAP. The outcomes of ANZUP studies will also be reported in consumer-friendly language in consumer communications. ANZUP has also begun using gender-inclusive language in PICFs.
CQUEST - Update
CQUEST held a workshop on Estimands on 8th February and a QoL workshop with CREST on 10th February. CQUEST has also been involved in ANZUP’s IGW’s and submitted abstracts for the ANZUP Annual Scientific Meeting in July 2022.
Trial Updates
BUP
- Penile cancer study: Recruitment is continuing, and the study has been promoted in recent ANZUP communications.
- MM-BCG QoL analysis: It is progressing well, and further discussion is undergoing.
Germ Cell
- QoL analyses: No update.
- Holistic supportive care intervention in Testicular Cancer: Discussions held at QoL concept development workshop and will be further considered in due course.
- PRESTIGE: Recruitment is progressing well, and it also includes a qualitative sub-study.
Prostate
- Decision-making after late PSMA-PET detected recurrence: Site selection is underway. Social media has not worked as a recruitment option, and other options are being considered. Members are encouraged to promote recruitment to study.
- Management of hot flushes: The team will follow up with investigators regarding progress.
- PROCOG: Recruitment passed the halfway mark during the year, with the aim to complete recruitment by end of 2023. Pilot cognitive rehabilitation intervention for men on ADT will be undertaken this year. RCC
- Kidney Cancer Information: The International Kidney Cancer Consortium (IKCC) consumer information resource on kidney cancer was reviewed by the team, and subsequent discussions were held with IKCC. The ANZUP-CAP has put forward a consumer-led MRFF to optimise informational support for shared decision-making and supported self-management, and the development of clinical guidelines for kidney cancer.
Nurses and Allied Health Focus Group on COVID-19 impacts
- Research manuscript was published: Roberts, Natasha A., Haryana M. Dhillon, Catherine Paterson, Kathryn Schubach, Margaret McJannett, and Australian and New Zealand Urogenital and Prostate Cancer Trials Group. “The impact of coronavirus disease 2019 on genitourinary and prostate cancer care and clinical trials: A qualitative exploration of the Australian and New Zealand experience.” Asia‐Pacific Journal of Clinical Oncology (2022).
BtB Research Grant Updates
2017
- Delivering personalised and evidence-based exercise support to men with metastatic prostate cancer via the internet – A pilot RCT examining intervention impact on behaviour change and QoL (Short)
This study has been completed, and algorithm was feasible and safe. The study may be extended to include men without metastatic cancer.
2018
- Why do men leave active surveillance? A mixed methods investigation examining factors contributing to adherence on active surveillance (Short)
The study has been completed and published.
- QualTheraP: A nested, multi-perspective longitudinal qualitative study of participants in the TheraP trial (Chambers/Ralph)
Results were published.
- Development and piloting of a Question Prompt List (QPL) to aid informed treatment decision making in men diagnosed with Localised Prostate Cancer (Smith)
The pilot study was completed and found a high level of content satisfaction and perceived usefulness. While the prompt list was acceptable it is not feasible for it to be administered in the urologist’s office or at the pre-urology appointment.
Fellowships and Awards
Janssen Nursing Allied Health Award 2017 – How do patients experience ANZUP Clinical Trials? (Roberts)
Qualitative analysis was written up.
ANZUP Nursing Allied Health Award 2017 – Economic and efficiency impact of a rapid access prostate cancer diagnostic service in WA: Analysis from provider and patient perspectives (Hawks)
PhD was submitted.
Noel Castan Fellowship: Kathryn presented her doctoral research at the British Association or Urological Nurses annual scientific meeting and was awarded the “best research presentation” award.
This work has recently been published: Schubach K, Niyonsenga T, Turner M, Paterson C. Experiences of sexual well-being interventions in males affected by genitourinary cancers and their partners: an integrative systematic review. Support Care Cancer. 2023 Apr 14;31(5):265. doi: 10.1007/s00520-023-07712-8. PMID: 37058163; PMCID: PMC10104925.
Other Activities
ANZUP’s membership has been steadily growing in terms of numbers, discipline, geography, and trainees.
Members noted that the QoL and Supportive Care Committee had matured and was making progress on its remit. There was good support from members for the QoL and Supportive Care Committee to continue in its current form as a stand-alone committee. There was also support to continue holding an IGW with a QoL/nursing focus.
In addition, EuroQol has secured seed funding to support QoL research and has encouraged its members to explore potential international collaboration.
