Update on BTAA CA project – June 2016
The BTAA Cancer Australia Project commenced in March 2016.
The Steering Committee will hold its first one-day meeting on 2 August 2016 in Melbourne and its second meeting on 11 September 2016 in Sydney.
The members of the project Steering Committee are: Dr Danette Langbecker (Research Fellow, Centre for Online Health, The University of Queensland), Dianne Legge (Brain Tumour Support Coordinator, Olivia Newton-John Cancer Centre, Austin Health, Melbourne), Sally Payne (IBTA, Sydney), and Dr Jonathon Parkinson (Neurosurgeon, Royal North Shore Hospital and Sydney University).
The Steering Committee is assisted by the Project Team - Tricia Berman, Susan Pitt, Janet Micallef, Rigoula Roussakis, Philip Steel and Annabelle Wilson (representing Cure Brain Cancer Foundation).
Melbourne and the Sydney Brain Cancer Week forums in May
There was discussion of the project at the Melbourne and Sydney Brain Cancer Week forums. The Melbourne forum included questions about the project in its end-of-forum questionnaire - we are awaiting the outcome of the questionnaire from Dianne Legge.
Separate meetings were held with Annabelle Wilson (Cure Brain Cancer Foundation) and Danette Langbecker (University of Queensland) in Melbourne. Annabelle thought that Cure Brain Cancer would be able to provide some assistance to the project via its staff in terms of design and publication. Danette is excited about the project as a means to improve access to support information for CALD communities.
NSW Neuro Oncology Group meetings
The April and June meetings of the NSW Neuro Oncology Group discussed the project (Dr Parkinson is a member of the Steering Committee). In April, it was suggested by the Group that the MSD information package 'Temodal Patient Support Resources' would be a good information resource to translate for CALD.
The 2013 MSD package includes: DVD for patients and carers, The Way Ahead information guide (46 pages), and a Temodal treatment diary.
- The DVD provides health care professionals explaining what to expect from surgery, radiotherapy and chemotherapy and how to manage some of the common side effects and challenges of the condition.
- The booklet 'The Way Ahead - a guide for those diagnosed with a brain tumour includes easy-to-understand information on the type of brain tumour you have, its symptoms, the treatment options and links to further support and help.
- The Temodal Treatment Diary (a tool to help you track and understand your treatment schedules) is a practical diary that you and your doctor can use to record correct dosages, start/finish treatment dates, medical appointments and other information you need on a daily basis. It is for use when you have finished your radiotherapy treatment.
The MSD package production involved a review by the following health professionals: Dr Lawrence Cher (MBBS, FRACP, MD; Laraine Cross (BA Grad Dip Ed BSW); Rochelle Firth (RN, NP, BN, Grad Dip Clin Pract, Neuro Certificate), Dr Elizabeth Hovey (MBBS, FRACP, MSc), Grant Ovens (B Pharm, MPS) and Mark Tudehope (B Pharm).
The June meeting of the NSW Neuro Oncology Group had a discussion about the patient forums to identify what resources are most appropriate for the CALD community. There was some disquiet about whether it was appropriate to hold separate forums for different CALD languages. This is an issue for the Steering Committee in August.
Existing Australian CALD resources for brain tumour patients/carers
An examination of existing Australian brain tumour information in languages other than English indicates that a range of Fact Sheets in different languages are available through the state cancer councils. Also, most cancer councils provide some assistance for multinational groups to obtain a translator to assist them. A list of existing material available in languages other than English will be provided to the August Steering Committee meeting.
Research on care and support for brain tumour patients
Considerable research has been undertaken in the past 15 years in Australia on the availability and quality of support for brain tumour patients and carers. Primarily, Dr Danette Langbecker has been involved in that research and the 2008 32-page booklet published by Queensland University of Technology 'It's Ok to Ask' was produced as an outcome of some of this research. A synopsis of Australian research into brain tumour care and support will be provided to the August Steering Committee meeting.
Existing research will also assist the Steering Committee to determine how it will identify the most appropriate brain tumour material for translation and production of other resources such as videos for CALD patients. The methodology used to identify what patients/carers want in terms of CALD resources will be an important consideration for the Steering Committee as it must form an evidence base for action in the second stage of the project – namely translation and production of materials. The methodology may, for example, involve: face to face forums with patients, written questionnaires, telephone interviews and/or a combination of both. Sources of information to identify those who can take part in the forums/questionnaires are also critical. The BTAA database may be one of a number of sources of patients.
Analysis of available translational services is being undertaken so that the Steering Committee can identify probable costings and options. This background will be provided to the first Steering Committee meeting.
The CA project requires that BTAA manages the funding provided by CA for the project. To that end, the BTAA Treasurer is including a separate oversight of the CA funding and that will be included in both the 3 year BTAA financial statement and the yearly audits. Care will be taken to ensure that all CA project activities are separately invoiced etc.
Volunteers and promotion
The project will require assistance from associated organisations and individuals. It is an opportunity for BTAA to work collaboratively on how to get information resources to all brain tumour patients and their carers in a timely fashion. This aligns with BTAA’s mission.
Information on the BTAA CA Project will be put onto the website so interested parties can contribute. Through the materials that the project produces, the BTAA website will be an important source of support information for CALD patients.
In February/March 2016, BTAA was successful in being awarded a Cancer Australia grant providing co-funding for a project to develop new brain tumour resource materials, including for culturally and linguistically different (CALD) communities.
In the first year, the project Steering Committee and Project Team held meetings and agreed to two possible new resources based on ‘It’s Okay to Ask’ and a pictorial map of the Brain Tumour journey with information for the doctor to complete for each patient. The Team also compiled a list of existing brain tumour resources available in Australia.
In November 2016, the Steering Committee decided to go through an Ethics Committee process to get approval for the conduct of brain tumour patient consultation on the two new resources. Approval was granted in May 2017 by The University of Queensland.
In September 2017, six Focus Groups engaging brain tumour patients and carers were held in Brisbane, Sydney and Melbourne. Dr Danette Langbecker (a Steering Committee member for the project) led the consultations.
In 2018, the project completed the design of the two resources and commenced translation into the following languages:
• Simplified and Traditional Chinese
The translation was undertaken by Polaron, a Melbourne based firm. Polaron also tests its translations with experts in each of the languages to ensure ease of understanding.
The project has also prepared a flier advising the availability of the two new resources in different languages.
Also, the project has identified an existing NEMICS video involving a high grade glioma patients/carer/family story for translation into the 10 languages. The video is being translated with sub titles in 10 languages and is expected to be completed this month.
The preparation of the brain tumour patient resources for both English speaking and CALD patients is unique. No other country has provided resources in the same number of languages for its brain tumour patients and so the resources are likely to be frequently read on the internet. It is hoped that the new resources and videos will be widely used across countries to provide SUPPORT to brain tumour patients.
The new materials will be placed on the BTAA website in May 2019. The new resources will be able to be easily downloaded and printed in whichever language is required. And medical staff will be able to provide brain tumour pathway information in the language of choice for patients and their families.
Launches of the new resources will be held in May 2019 in capital cities.
Read Tricia's June 2016 Progress Report. (pdf)
For more information on the project see our news page and contact Tricia by emailing firstname.lastname@example.org.
Thanks to Cancer Australia, The University of Queensland and NEMICS for your assistance in producing the new resources for patients.
A national launch of the new resources will be held in the first half of 2019.