ALAN reports back on ESMO congress

The Acute Leukemia Advocates Network (ALAN) attended the European Society for Medical Oncology (ESMO) congress which took place virtually over a week end in September 2020 and one week end in October 2020.

ESMO is the leading professional organisation for medical oncology. With more than 25,000 members representing oncology professionals from over 160 countries worldwide, ESMO is the society of reference for oncology education and information.

ESMO’s core mission is to improve the quality of cancer care, from prevention and diagnosis all the way to palliative care and patient follow-up. It is to educate – doctors, cancer patients and the general public – on the best practices and latest advances in oncology. And it is to promote equal access to optimal cancer care for all patients.

Patient Advocacy sessions topics and discussions

Survivorship is not survivorship without quality of life

Number of cancer survivors is increasing and quality of life needs to be enhanced. Patients want to be part of decision making “Nothing about me without me!”

Quality of life is recognized by all stakeholders to be very important, however is rarely incorporated in patient treatment and routine care.

Survivorship is everyone ‘s work. Services can be build to address growing needs from patients, including quality of life and development of support care for patients.

Few initiatives were presented to the audience, such as the platform called www.talentconnector.nl which is a matching app for recruiters and cancer patients who are looking for a job in the Netherlands and the multidisciplinary approach used in Spain to challenge change. Both initiatives are evidence based.

The cancer journey: The importance of getting the right physical and mental support

Pain occurs in more than 50 % of patients but is not the only impact that cancer may have :

Holistic support should be provided to each cancer patient

Pre-habilitation at the time of diagnosis or relapse is as important as post-treatment rehabilitation

Rehabilitation is defined as “a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments” – WHO, 2011.

In different studies, it has been reported that oncologists underestimate patients problems such as side effects, functional problems etc.

Improving cancer patient’s mental health: The “War on cancer” project

This project is born from a personal experience and evidence: cancer inflicts trauma, causing 22% of cancer patients to experience PTSD and 25% to experience clinical depression. There are different coping mechanisms to that:

• Journaling
• Social support
• Helping others.

The War on Cancer app include all this and aims to improve the mental health of everyone and anyone affected by cancer. On the app you’ll be able to connect with people from all over the world with different types of diagnosis, This is the social network where your stories and experiences can make others feel better. A place where sharing your experience helps make others feel like they belong. A community where you’re never alone because we are fighting cancer together. A place to make new friends and connect with others that understand what you are going through.

Link to the app: https://apps.apple.com/us/app/war-on-cancer-social-app/id1317767189

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In addition, we attended some general sessions and can share more information if you are interested:

• Maximizing quality of life: definition of “hope”, importance of appropriate support, importance of personnalized clinical follow up, importance of clinical trial design (relevance of traditional clinical endpoints, choice of endpoints, methodological assessments etc.)
• Challenges in managing an aging population of patients with cancer: prehabilitation for surgery and beyond, why we should continue pushing for prehabilition, balancing benefit, harm and patient priorities in older adults with cancer
• AYA: adults or children?
• Supporting informal carers: supporting parents of children who have cancer, informal Caregiver Support at home (InCaSu@home project), Lived experience from caregiver
• Phase I clinical trials: What does this mean for our patients?
• Evolving Cancer Nursing role
• Oncology care during Covid-19: How does it affect our patients? (patient experience according to patient advocates and patient-reported experiences of cancer care related to the COVID-19 pandemic)
• Cancer policy: What it is and why you cannot work without it ? Connecting the dots: The EU plan to beat cancer, EU cancer policy, Health equity

Also find the complete agenda here: https://www.esmo.org/meetings/past-meetings/esmo-virtual-congress-2020/programme

As we couldn’t attend all the sessions, if there is a particular one you would like us to provide some information on, please feel free to email Samantha samantha@acuteleuk.org . We would listen the session for you and provide you with a report.

Additional resources

Twitter: @myESMO