VICS Optimal Care Summits endometrial cancer consultation 2024

Consultation

Over the latter half of 2024, the VICS have been consulting healthcare providers and other stakeholders in every stage of care and support for endometrial/uterine cancer in Victoria – oncologists, surgeons, nurses, GPs, palliative care specialists, allied health professionals, consumer advocates, and more.

Consultation and engagement throughout 2024 led up to a live summit event on Friday 22 November, focused on three priority variations (see below). That summit will generate proposed actions for cancer service improvement priorities, informed and supported by health organisations across Victoria.

Rapid literature reviews

Our mixed-methods strategic consultation approach includes a rapid review of existing literature. Our first review explored known patterns of endometrial cancer care, what strategies have been used to determine and address unwarranted variations, and effectiveness of those strategies to date. A second review looked existing evidence on the experiences of endometrial cancer patients across Australia.

• Read the patterns of care review (PDF)
• Read the patient experience review (PDF)

Barriers, enablers, and preferences

We sent 119 stakeholders across Victoria a survey, asking them to select perceived unwarranted variations in endometrial cancer care in their region and to describe barriers, enablers, and preferences for optimal care.

Over half of respondents felt access to bariatric surgery was a key unwarranted variation, while close to half identified time from diagnosis to treatment, time to surgery, and access to supportive care. Other key unwarranted variations described by multiple respondents included access to clinical trials, delays in time to diagnosis, access to fertility preservation, lack of presentation at multidisciplinary meetings (MDMs), and access to MDMs.

We noted variation between the perceived unwarranted variations in metropolitan vs regional areas. For example, access to bariatric surgery and supportive care was seen as a limitation in metropolitan areas, but was much less recognised in regional areas. This may be attributed to differences in available services.

• Read the survey report (PDF)

Patient experience data

Following our review (above) of existing evidence on patient experiences across Australia, the VICS collected new data on the experience and perspectives of people treated for endometrial cancer in Victoria (and their carers). We distributed a survey through a national Facebook support group, and held eight focus groups with Victorian patients and carers. Results highlighted numerous care gaps – particularly in timely diagnosis and treatment, lack of supportive care referrals, and gaps in communication.

• Read the patient experience data report (PDF)

Variations

The VICS, our expert advisory group below, and the Victorian Department of Health’s Analysis of Linked Information in Cancer (ALIC) data unit agreed on key indicators relevant to endometrial cancer care across Victoria, from a range of linked cancer datasets. The VICS Optimal Care Summits team reviewed data on each indicator to identify unwarranted variations, which were then cross-checked by the ALIC team and analysed for clinical significance by the advisory group.

To prioritise unwarranted variations for action, the VICS surveyed the expert advisory group and more than 100 other key stakeholders in endometrial cancer care across Victoria. 

• Read the full prioritisation report (PDF)

We defined 23 unwarranted variations in care and outcomes across Victoria, grouped by the 7 Optimal Care Pathway (OCP) steps. The 3 variations in bold below were prioritised for discussion at our live summit event.

OCP Step 1: Prevention and early detection

(No data examined)

OCP Step 2 – Presentation, initial investigations and referral

• Increasing proportion of patients who presented to an emergency department before their diagnosis
• Higher proportion, in Loddon Mallee, of patients who present to emergency departments before diagnosis.

OCP Step 3 – Diagnosis, staging and treatment planning

• Lower proportion, in regional areas, of patients being discussed at multidisciplinary meetings (MDMs)
• Low rates of supportive care screening, statewide
• Low rates, in some areas, of recording cancer stage in multidisciplinary meetings
• Low rates, statewide, of recording patients’ ‘ECOG’ status in multidisciplinary meetings
• Low rates, statewide, of communicating treatment plans to patients’ GPs

OCP Step 4 – Treatment

• Lower proportion of patients, in Southern Melbourne, staying in hospital less than 3 days after a hysterectomy
• Increasing delay between diagnosis of low-grade tumours and starting treatment, statewide
• Variation, between areas, in delay between diagnosis of low-grade tumours and starting treatment
• Increasing delays between diagnosis of high-grade tumours and starting treatment, statewide
• Variation, between areas, in delay between diagnosis of high-grade tumours and starting treatment
• Decreasing proportion, statewide, of patients aged 50+ who receive surgery within 6 weeks of diagnosis with low-grade tumours
• Decreasing proportion, statewide, of patients aged 50+ who receive surgery within 6 weeks of diagnosis with high-grade tumours
• Lower proportion, in Southern Melbourne, of patients who stay in hospital for less than 3 days after a hysterectomy.

OCP Step 5 – Care after initial treatment and recovery

• Decreasing rates, statewide, of referrals to a physiotherapist within 3 months of diagnosis
• Low proportion of patients, statewide, who see a dietitian in hospital within 3 months of diagnosis
• Low proportion of patients, statewide, who see a psychologist in hospital within 3 months of diagnosis
• Low proportion of patients, statewide, who see a social worker in hospital within 3 months of diagnosis
• Lower survival rates in the Loddon Mallee region, for patients with high-grade tumours
• Decreasing survival rates, in the Barwon South West region, for patients with high-grade tumours.

OCP Step 7 – End-of-life care

• Low proportion of patients, statewide, who had an advance care directive in place before they died
• Increasing proportion of patients, statewide, presenting to emergency departments in the month before they die.

With the help of our expert advisory group (below) and other stakeholders, the VICS will now develop a ‘Victorian Endometrial Cancer Action Register​’ – collecting and sharing proposed actions to address some or all of the variations above.

Advisory group

The multidisciplinary group of expert stakeholders below met for the first time in early June 2024 and came together regularly before and after the summit. They guided surveys of stakeholders, analysis of data, and identification of unwarranted variations as described above.

• Dr Simon Hyde (Co-chair) – Director Gynaecological Oncology, Mercy Hospital for Women​
• Dr Rosemary McBain (Co-chair) – Gynaecological Oncologist, Royal Women’s Hospital ​
• Dr Sumitra Ananda – Medical Oncologist, Western Health​
• A/Prof. Yoland Antill – Medical Oncologist, Cabrini Health​
• Dr Rob Blum – Clinical Director Cancer Services, Bendigo Health​
• A/Prof. Ian Collins, Medical Oncologist – South West Oncology​
• Dr Kristin Cornell – Obstetrician and Gynaecologist, Southwest Health Care
• Sally Dooley – General Practitioner, Carlton Medical Centre​
• A/Prof. Mahesh Iddawela – Medical Oncologist, La Trobe Regional Health​
• Nicole Kinnane – Clinical Nurse Consultant, Peter Mac​Callum Cancer Centre
• Erika Kotowicz – Oncology Rehabilitation Care Coordinator and Senior Clinician Physiotherapist, Barwon Health
• Erin Laing – Senior Dietitian, Peter Mac​Callum Cancer Centre
• Dr Carminia Lapuz – Radiation Oncologist, Austin Health​
• Dr Ming-Yin Lin – Radiation Oncologist, Peter Mac​Callum Cancer Centre
• Dr Marsali Newman – Pathologist, Austin Health​
• Dr Niveditha Rajadevan – Gynaecological Oncologist, Peter Mac​Callum Cancer Centre​
• Dr Matthew Read – Bariatric surgeon, St Vincent’s Hospital, Melbourne​
• Mrs Kelly Scorey – Cancer Services Ambulatory Services Manager, Oncology
• Nurse, and Nurse Unit Manager, Kyabram District Health Service​
• Rachel Smith – Gynae-oncology Inpatient Ward CNC, Mercy Hospital for Women​
• Dr Margreet Stegeman – Obstetrician and Gynaecologist, Shepparton Women’s Health Centre​
• A/Prof. Kate Stern – Fertility Specialist, Gynaecologist and Reproductive Endocrinologist, Royal Women’s Hospital​
• Dr Lee Na Teo – Medical Oncologist, Ballarat Health Service​
• Nicole Webb – Cancer Care Coordinator, Albury Wodonga Health​
• Dr Kate Webber – Medical Oncologist and Gynaecological Cancer Trials Stream Lead, Monash Health​.