Head and Neck Cancers Information Session:
Bringing WCMICS’ clinicians and people affected by head and neck cancer together
Head and neck cancer is generally a range of cancers which include the mouth, tongue, palate, jaw, salivary glands, tonsils, throat, voice box, nose and sinuses. Approximately 4,400 people in Australia are diagnosed with a head and neck cancer each year.
On Friday 26 July, Western and Central Melbourne Integrated Cancer Service (WCMICS) organised a head and neck cancers event, titled ‘Quality of Life’. Radiation oncologist Dr Tsien Fua from the Peter MacCallum Cancer Centre (Peter Mac) spoke on the eve of World Head and Neck Cancer Day about the importance of raising awareness each year. He also eloquently described major quality of life aspects such as hair that doesn’t grow back, changes in speech, dry mouth, lack of taste for favourite foods, changes in relationships with loved ones and fear of cancer recurrence. Two consumers, Ben and Chris, each shared their lived experiences of life before cancer, diagnosis, treatment, survivorship and supports. They spoke about the support available to them during their journey, including from family members and multidisciplinary teams, and from organisations such as CanTeen and Camp Quality for Ben’s children.
A morning tea at the intermission provided the chance for attendees to share their stories and experiences, and many were surprised to hear of the similarities in symptoms, treatment or side effects. Our healthcare professionals spent their valuable time speaking with head and neck cancer patients, carers and family members who they had met previously in either a hospital and/or clinic setting.
The second part of the session was a question and answer panel with Dr Tsien Fua, Wendy Poon (head and neck nurse consultant at Peter Mac), Lisa Tran (dietitian at Melbourne Health), Dr Felix Sim (oral and maxillofacial surgeon) and our consumers, Ben and Chris. This enabled robust discussion around topics such as maintaining weight during treatment, the importance of listening to the patient's perspective and difficulties finding evidence-based information without 'Dr Google'. To conclude the event, Chelsey from Cancer Council Victoria highlighted the benefits of support groups. She also outlined the Cancer Connect program, online and telephone groups, and the 13 11 20 information and support phone line.
We were pleased with a fantastic attendance of 44 people affected by head and neck cancers. This included a gentleman, ‘Tony’, eight-weeks' post-treatment and reliant on a nasogastric feeding tube, and a lady, ‘Barbara’, communicating with a laryngectomy. Our initial feedback via survey indicates that the event was well structured and organised—'Exceeded my expectations,' and a special mention of, 'Thanks for recognising the need for these forums'.
We are now planning for our second event to be held on Friday 25 October, 2019 at Kensington Town Hall. The format will involve consumers sharing ‘My personal experience’, guest speakers and a variety of healthcare professionals. There will also be stalls covering a variety of aspects including: oral hygiene, good nutrition and eating, treatment and side effects, and supports available.
Questions? Contact Tara Gannon at WCMICS on (03) 8559 8560 or email <firstname.lastname@example.org>
Victorian Tumour Summits and NEMICS held a Soup for the Soul fundraiser lunch, in recognition of World Head and Neck Cancer Awareness Day, Saturday 27 July 2019. All donations go to <www.beyondfive.org.au>.
Update 27 May 2019:
Arising from outcomes of the Head and Neck Cancers 2018 Summit and a 2018 survivorship project, and complementary to the Head and Neck Optimal Care Pathway implementation, Western Central Melbourne Integrated Cancer Services will be establishing a Victorian head and neck support group. The group will be developed with the help of Cancer Council Victoria (CCV) utilising their Cancer Support Group Program Framework.
The Head and Neck Cancers 2018 Summit acknowledged and agreed there is a need for increased patient and family support in Victoria for head and neck cancers. There is a well-recognised impact on quality of life for patients and their families from the disease and its treatments.
The intention of a support group is to improve patient experience in a safe environment. A group provides emotional, practical and informational support 1, and social and advocacy activities as determined by the members. The group may also discuss the impacts of diagnosis and treatment. Research has shown peer support can improve quality of life by reducing feelings of isolation, stress and anxiety in people affected by cancer 2, 3. It can also foster two-way communication between patients and their health care teams4. Once established, clinicians can refer patients and their carers to the group for emotional and practical support from others with a lived experience of head and neck cancers.
The success of a support group is greater if it is recognised by CCV, utilises CCV support group training and resources, and is aligned with a health service. The CCV cancer nurse telephone service will refer callers to the support group, and the group will be listed on the CCV website and promoted via the Beyond Five website. Beyond Five is a great resource for consumers and health professionals alike, dedicated to improving the quality of life of everyone affected by a head and neck cancer through education and access to support.
1L. Hoey et al., 'Systematic review of peer-support programs for people with cancer', Patient Education and Counselling, vol.70,Iss.3, 2008 pp. 315–337. Available from Clinical Key (accessed 27 May 2019).
2Chronic Illness Alliance, 'Peer Support for Chronic and Complex Conditions: A literature review', 2011. Available from Chronic Illness Alliance (accessed 27 May 2019).
3B. Gottlieb & E. Wachala, 'Cancer Support Groups: A critical review of empirical studies', Psycho-Oncology, vol.16, 2007, pp.379–400.
4Peers for Progress & the Ncational Council of La Raza, 'Global Evidence for Peer Support: Humanising health care', 2014. Available from Peers for Progress, (accessed 27 May 2019).
Update Thursday 15/11/2018:
- The HN2018 Summit Report is available in related documents.
- The HN2018 Summit Data Presentation video is now available. Head and Neck Working Party Co-chair Mr Stephen Tudge presents.
Update Monday 05/11/2018:
- Online resources are now linked below
Update Wednesday 24/10/2018:
- Highlights from the HN2018 Summit are now available below
- The HN2018 Summit Data Presentation PDF is now available below
- For the complete HN2018 Summit Highlights e-newsletter, view in browser or see documents below
Update Tuesday 25/09/2018:
Who are leading the Summit?
A clinical working party, co-chaired by Mr Stephen Tudge and Dr Andrew Coleman, has convened to guide the Summit planning, oversee data analysis and refine recommendations after the Summit. Clinical representatives from health services within each ICS are invited to attend the Summit. Organisations with a stake in improving head and neck cancer care outcomes and experience of care will also be represented at the event.
- Outcomes including incidence, mortality, and survival compared across Victoria
- Treatment patterns for patients with head and neck cancer, including utilisation of treatment
- Hospital volumes of surgery of head and neck procedures across Victoria
- Review data on multidisciplinary clinical practice and outcomes across the state
- Identify variations in care that are unwarranted and important to address
- Agree on statewide priority areas through facilitated group discussion
The Head and Neck Cancers Summit working party of multidisciplinary clinicians, co-chaired by Stephen Tudge and Andrew Coleman, presented seven variations based on existing data sources for discussion at the Summit.
The seven variations were:
- Many centers provide treatment for less than 10 patients per year (39 surgical, 12 radiotherapy)
- Many patients have treatment outside their ICS of residence
- The proportion of patients with evidence of an MDM discussion of their treatment was lower in Barwon & South Western and Loddon Mallee ICS
- Fewer regional patients treated locally (66%) start their radiotherapy within 8 weeks of diagnosis than regional patients treated in metro (76%) and metro patients treated in metro centers (80%)
- Of all patients having adjuvant radiotherapy, only 37% started within 6 weeks of surgery, with lower rates in Barwon & South Western and Grampians ICS and in 1 metro and 1 regional center
- The proportion of patients receiving dietetic care may be lower in regional treatment centers
- There was poorer survival for oropharyngeal and base of tongue cancer patients who were treated with radiotherapy only compared to other treatment types
Two additional variations raised by attendees were:
- Use of data from clinical sources
- Increasing subspecialty input at remote MDMs
The aim of the subsequent discussion was for the attendees to prioritise several variations for statewide action. Prioritising proved somewhat challenging. During the first small groupwork exercise, all seven variations were assessed by attendees as high impact on an impact/effort matrix.
Variations assessed as easiest to achieve with a high impact were numbers 3 and 6.
Seven out of nine groups assessed variation 2 as the hardest to achieve with a high impact. This variation is implicitly linked to variations 1, 6 and 9, and has the potential to improve appropriate care for patients within the framework of patient-centred care. Ideas for this improvement were:
- The use of telemedicine to access dietetic care
- Formalisation of links between centres
- Standardisation of multidisciplinary team meeting (MDM) documentation
- Implementation of a patient information package on subsidies for travel and accommodation costs
- Multidisciplinary team agreement on criteria for PEG insertion
Despite the challenges of high impact/ high effort variations, attendees assessed many variations as within their sphere of influence to investigate and improve upon at a local level with post-Summit action. Some of the ideas shared on the day were:
- Document the MDM treatment plan in the medical record
- Assist less experienced doctors with documenting the reason why there has been a delay in patient treatment in patient notes
- Reflect on the possible reasons a health service provider or region is not meeting the statewide average and discuss the Summit with colleagues who did not attend
- In order to increase knowledge of the Optimal Care Pathways (OCP) across all stages of treatment, attach the two-page OCP reference guide to patient notes in MDMs and send to GPs and referring clinicians
Improving Oral Cancer Care
Dental Health Services Victoria is leading development of a statewide educational package for oral health professionals on early recognition of oral cancers.
Quit Smoking Video
We are always seeking feedback to improve summit attendance and events. Please join us on our Linkedin group to add your voice and share any suggestions for improvement with the Victorian Tumour Summits Communications Officer Rebecca Miller.
|Alam Alamgeer||Stephen Brown||Penny Chapman||Andrew Coleman||David Deutscher||Tsien Fua||Hui Gan|
|Mark Guirguis||Colin Hornby||Rhys Hughes||Tim Iseli||Hari Jeyarajan||Bernard Lyons||Maithum Mathlum|
|Rodney Mitchell||Stephen Tudge||Eliza Tweddle||Mori Wada||David Wiesenfeld||
|Mirela Matthews||Rebecca Miller||Paul Mitchell||Claire Porter|
|Amy Sercombe||Luellen Thek||Ella Stuart||Luc te Marvelde|