IBTA’s Kathy Oliver explains the International Brain Tumour Awareness Week, why it matters and how we can all get involved at this special time
[27 October 2020] The IBTA’s monthly e-News has now been released and been emailed to all subscribers. Highlights from this issue include the announcement of this year’s International Brain Tumour Awareness Week and news that of a clinical trial of 5-ALA for children and adolescents with brain tumours that is taking place in centres across Germany.
On 23rd September, the European Cancer Organisation launched the European Code of Cancer Practice in the virtual presence of EU Commissioner for Health and Food Safety Stella Kyriakides. The Code is a citizen and patient-centred manifesto of the core requirements for good clinical cancer practice, in order to improve outcomes for all of Europe’s cancer patients. The rights are based on the best available medical evidence and this is summarised in a supporting paper on the Medical Literature and Evidence.
The Code sets out a series of 10 key overarching rights, and in particular signposts what patients should expect from their health system, in order for them to achieve the best possible outcomes. It is an empowerment tool to ensure the best available care is delivered for European citizens and patients. Each of the 10 overarching rights (see below) is linked to three questions that a patient/parent/guardian may choose to ask their healthcare professionals. Each right is supported by a short section of Explanation (one page, <500 words) which is intended to be accessible to cancer patients and to all other interested parties including citizens, carers, parents/guardians, advocates and healthcare professionals.
The European Code of Cancer Practice has been co-produced by a team of cancer patients, patient advocates (including the IBTA’s Chair Kathy Oliver) and cancer healthcare professionals. It has its origins in the European Cancer Patient's Bill of Rights, which was launched in the European Parliament on World Cancer Day 2014 and won the prestigious European Health Award in 2018. The Code focusses on informing and assisting cancer patients at all stages of their cancer journey. It sets out a series of ten key overarching rights, and in particular signposts what patients should expect from their health system, in order for them to achieve the best possible outcomes.
The Code also been translated into seven languages, which are available here.
Read more about the code and view it online here.
In April and May 2020, the IBTA, as part of its work with the Society for Neuro-Oncology (SNO) COVID-19 Task Force carried out the first international survey within the global community of brain tumour patients and caregivers on how the COVID-19 pandemic had directly affected them. The survey results have now been published in Neuro-Oncology Advances. In total, 1,989 participants completed the survey from 33 countries including 1,459 patients and 530 caregivers.
Among the findings, the survey found that while this pandemic has been an extremely stressful time for this population, caregivers were significantly more anxious than patients.
Furthermore, from those polled, respondents in the Americas were found to have been most likely to have lost their jobs, practiced self-isolation, and received telehealth services. When asked to rank the most trusted sources of information during the pandemic, healthcare providers, brain tumour charities, and not-for-profits were the most trusted.
The results serve as a rich resource of data and personal testimonials to help individuals and organisations in the brain tumour community to ensure they continue to fulfil patients’ expectations and retain patients’ trust by providing accessible, high-quality care, information, and support.
Lead author, neurosurgeon Dr Mathew Voisin (Toronto, Canada) said: “Among the wealth of information collected through the survey, the results revealed that because of COVID-19, brain tumour patients and caregivers experienced a significant amount of stress and anxiety.”
The paper’s co-authors include the IBTA’s Chair Kathy Oliver, Dr Gelareh Zadeh, Tess Chee and IBTA Senior Advisors: Dr Stuart Farrimond, Jean Arzbaecher, Carol Kruchko, Mary Ellen Maher, Chris Tse, Rosemary Cashman, Maureen Daniels, Christine Mungoshi, Sharon Lamb, Anita Granero, Dr Mary Lovely, Jenifer Baker and Sally Payne. Read the full article online here (free access to the PDF).