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Update 12 Oct 2020:

Head and neck cancer 2020 video series: Part two of two
Julie McCrossin

Freelance journalist and former ABC broadcaster Julie McCrossin was diagnosed with oropharyngeal cancer in 2013. Part two of our interview with Julie focusses on her head and neck cancer videos as a resource for established and new clinicians, and a consumer perspective on head and neck cancers care.

The thing about head and neck cancer is it is multidisciplinary. Multidisciplinary treatment began with head and neck cancers because it is generally acknowledged to be one of the toughest cancers due to the comprehensive nature of its impact. Because it is on the head and neck, you cannot hide what has happened to you. Secondly, it affects basic life functions; speaking, swallowing and eating. I lost speech completely for several months and spent one year getting it back. I lost swallowing almost completely, I was only on liquid food.

For a new trainee surgeon, radiation therapist or nurse coordinator entering this field for the first time, these videos are a quick way to hear the latest innovations from leading clinicians across the the whole multidisciplinary team. Because MDMs are quick and focused on the individual patient, people tend to focus on their area of expertise. That's natural in a time pressure health system. This enables you to spend 30 minutes with each of the team members and get the latest information. That is why it is good for new team members.

They’re also for experienced MDM members. I met a surgeon who had been working in head and neck cancer for a number of years and [who] had never entered a radiation bunker. I find that startling. Our health system has become so specialised, [in order] to bring high-level expertise to each individual role, that a surgeon or a radiation oncologist may not have ever seen what a speech pathologist does to make [their] patient regain speech and swallowing. You may not have seen what is in the videos; a new tool for measuring the strength of the swallow function and assisting the person to redevelop it. Even working in a multidisciplinary team, you are not necessarily up-to-the-minute with what the latest technology or practices are in your field.

While it will take a certain humility for an experienced head and neck cancer team member to view these videos, based on direct feedback from LinkedIn and Twitter I am confident [of their value to clinicians]. [And] I’ve built up 11,000 followers on Twitter, [of whom] over 80% are members of multidisciplinary cancer teams in English-speaking countries. 

Head and neck cancer clinicians feel that it is not just their patients who get insufficient funding, research and care; they feel abandoned, too. They are devoting their lives to a patient group that gets hardly any attention and very little funding for research. They are thrilled that someone with a history at ABC TV and radio has produced a very high-quality set of videos with a professional film-maker. That someone is finally paying attention to their work. Some of them acknowledge that they have failed to attract sufficient attention from funding agencies and the health sector, and that they need patients and families to join with them to lobby for higher awareness and more investment.

I think it is incumbent upon clinicians and patients in the cancer community to advocate for the allocation of funding for research on the basis of evidence of need. We want evidence-based treatment for our psychological and our physical health treatment. One of the videos is on mask anxiety and research that has been funded for just under $600,000 by Cancer Australia to find an alternative. I'm thrilled to say I have played a role in making that happen. A significant proportion of patients find it hard and there are no protocols on pre-education. There is no support prior to treatment. And you have it every day for 30 days at a minimum. I'm not surprised there are suicides. Many of the suicides are linked to the side-effects of radiation. It is a really tough area. 

The key message from head and neck cancer patients is to take care of our psychological well-being during treatment as well as after treatment. There are two videos on managing distress. Because, its impact on our physical appearance and our basic functions of speaking and swallowing are causing huge amounts of emotional suffering and we have a very high suicide rate. So, insuring that everyone takes responsibility for patients’ emotional health and managing distress is critical. 

See the videos here: https://headneckcancerforum.com/

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Update 8 Sep 2020:

Head and neck cancer 2020 video series: Part one of two
Julie McCrossin

Julie McCrossin is a freelance journalist and facilitator. Julie is a former broadcaster with 20 years experience working for ABC Radio National, ABC TV and Network Ten. In 2013, she was diagnosed with stage 4 HPV-related oropharyngeal cancer.  She is an Ambassador for Beyond FiveTargeting Cancer and TROG Cancer Research, and was awarded a Member of the Order of Australia for significant service to the community in 2019.

My traumatic experience of insufficient preparation for the immobilisation mask used in my radiation treatment started me on a journey of providing easily accessible, evidence-based information to help other head and neck cancer patients and their families survive physically and emotionally as best they could. 

I reached out to clinical multidisciplinary team members to work in partnership. I also approached other patients. It opened my eyes to the multiple challenges faced by head and neck cancer patients. [The majority of] patient groups focus on peer support and peer education. They want their support and information from peers. I'm a little bit different. Both my brothers are medical specialists; my father was an orthodontist, my daughter is a doctor. Many of my friends are doctors. As a patient, I wanted to hear from the most qualified clinicians who were having the highest volume of patients like me. The evidence is that if you want to survive cancer you go to a treatment centre that has a specialist in your field and that has a high volume of patients. 

My view is that we need both [peer and clinician resources] in the patient survival community. We need peer support and we need access to expert information. In this series of 16 videos, I brought together a group of multidisciplinary team members. You only survive a head and neck cancer if you have multidisciplinary care. Our symptoms get worse at five years and beyond; the time when most cancer patients have less symptoms. We need multidisciplinary information and support throughout our survivorship; really [for] the rest of our lives.

I sat down and interviewed 16 people with demonstrated expertise in every aspect of treatment and care, focusing on innovation and improving quality of life. I've incorporated patients as well, telling their relevant stories and asking their questions. The videos range in length from 9 minutes to 44 minutes. We have had over 4,000 viewers and they have viewed them for over 30 hours. In other words, people are going to these videos and staying to watch for a considerable period of time.

We have also made over 25 key snapshots, which are the key messages from the interviews. They are 30 seconds to 4 minutes long and we have circulated them on Facebook, Instagram, LinkedIn and Twitter. We've had 23,000 views. They were only released 27 July [World Head and Neck Cancer Day].

In the videos, when we talk about innovations in surgery we've gone into an operating theatre with the latest robotic surgery that is used for head and neck cancers. I interview the surgeon, the speech pathologist and the dietitian who works with surgical patients. For radiation therapy, we are in a bunker with one of the latest LINAC (Linear Accelerator). With the radiation oncologist, they are there with a mask so they can explain what it is for. So, a lot of this education is visual. A lot of head and neck treatment is so bizarre and to some degrees so frightening, it is like an episode of Doctor Who. You have to see it to believe it. 

I told myself that if I survived [my cancer] I would show people what happened [during treatment], so other people who get these cancers have at least seen it before. We've now seen women with double mastectomies; we know what it looks like. I want people to see the mask, the radiation therapy machine, the survivors with facial disfigurement. That is a very harsh term, ‘facial disfigurement’, but some people have the story of their surgery on their faces. We don't see those people, they tend to hide. I'm trying to demystify and make it less frightening by [providing] hope-filled, evidence-based information and meeting people.

See the videos here: https://headneckcancerforum.com/

This article is based on an interview transcript. It has been edited for clarity.
Pictured cake made by the head and neck radiation oncology specialist, Dr Tsien Fua, for the
2020 Linac Bake Off.

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Update 2 Dec 2019:

A/Prof David Wiesenfeld

Last November’s Head and Neck Cancers Summit brought together more than 100 participants from a wide range of disciplines to discuss state-wide head and neck cancer data and prioritise areas for further investigation and action. 

The organisers and attendees facilitated excellent data discussion, which allowed us to achieve a greater understanding of the needs of Victorian head and neck cancer patients and their families. Our quest for improved and consistent care for patients has been enhanced by this successful summit. 

Since the summit, deliberations have continued to achieve consensus regarding management issues, goals and targets for the future. A balance has to be achieved between the needs of rural and metropolitan patients to ensure access and equity of care across the state. There has been considerable discussion regarding the issue of minimum case numbers in a treatment centre to maintain clinical excellence, balanced against the tyranny of distance for country and regional patients, which can see patients and families separated for significant periods during long and arduous treatments in the quest for cure. 

One proposal to deal with the challenges for low volume centres is affiliation and resource sharing with one of the larger established high-volume city centres. 

The summit has generated initiatives to improve the early diagnosis, supportive care and survivorship for head and neck cancer patients.  These include the establishment of a Head and Neck patient support group by the Western Central Melbourne Integrated Cancer Service (WCMICS), which has already held two successful meetings patients with more information sessions and focussed sessions planned. The Royal Melbourne Hospital has also initiated a specific support group for female head and neck cancer patients. Oral cancer in particular is becoming more common in females, particular in non-smoking, and non-alcohol drinking females; whilst the incidence in smoking and alcohol drinking males is falling, along with a reduction in smoking rates. Female patients present with different supportive care needs compared to males—we hope that these needs can be fulfilled as the two programs evolve.

The Victorian Comprehensive Cancer Centre (VCCC) hosted a forum in March 2019 for Primary Care Practitioners in Oral and Oropharyngeal Cancer. Run as part of the VCCC’s Research and Education Lead program, this highly successful forum was oversubscribed with over 200 attendees (predominantly oral health professionals) with 100 more on the waiting list. Speakers from all of the VCCC alliance member hospitals presented on early diagnosis, principles of management, and the partnership with primary care in the follow up and supportive care of patients. 

The lectures were video recorded and can be accessed on the VCCC website https://www.viccompcancerctr.org/oral-cancers/. Plans are underway to develop a webinar specifically targeted to medical primary practitioners. It is hoped that improving primary practitioners’ understanding of Head and Neck Cancer will lead to improved early diagnosis and referral, as well as better supportive care within the community.

Update 30 Sep 2019:

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 <tara.gannon@wcmics.org>
 


Update 31 Jul 2019:

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:

Head and Neck Cancers Support Group

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:

Update Monday 05/11/2018:

Update Wednesday 24/10/2018:

Update Tuesday 25/09/2018:

  • Preliminary data and the agenda for the Summit are now available below

Who are leading the Summit?
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. 

Which data will be presented at the Summit?
The working party has identified key points of enquiry for data analysis: 

  • 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

Why does this matter to clinicians?
Clinician participation in the Summit is critical. At the Summit, participants will have the opportunity to:

  • 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

Summit Highlights

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:

  1. Many centers provide treatment for less than 10 patients per year (39 surgical, 12 radiotherapy)
  2. Many patients have treatment outside their ICS of residence
  3. The proportion of patients with evidence of an MDM discussion of their treatment was lower in Barwon & South Western and Loddon Mallee ICS
  4. 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%)
  5. 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
  6. The proportion of patients receiving dietetic care may be lower in regional treatment centers
  7. 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:

  1. Use of data from clinical sources
  2. 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.

Resources

Quit Smoking Video
https://education.eviq.org.au/rapid-learning/smoking-cessation


Beyond Five is an online resource for patients with head and neck cancers
 


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.

Head & Neck Summit working party

Alam Alamgeer Stephen Brown Andrew Coleman David Deutscher Tsien Fua Hui Gan
Mark Guirguis Colin Hornby Rhys Hughes Hari Jeyarajan Bernard Lyons Maithum Mathlum
Stephen Tudge Eliza Tweddle Mori Wada David Wiesenfeld

Jane Harrowfield

 

Project team

Mirela Matthews Rebecca Miller Paul Mitchell Claire Porter
Amy Sercombe Luellen Thek Ella Stuart Luc te Marvelde

Related documents below

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