Convening, learning and collaborating for improved outcomes and greater hope for people with metastatic brain tumours in collaboration and cooperation with
24th - 26th June 2023
THE INTERCONTINENTAL WIEN HOTEL, VIENNA, AUSTRIA
Report written by Jacqueline Partarrieu
The International Brain Tumour Alliance (IBTA) is grateful to the following companies for their support of the first International Patient Advocacy Symposium on Brain Metastases:
We are very grateful for our collaboration with the American Brain Tumor Association (ABTA) regarding this Symposium whose cooperation and enthusiasm for this event was indispensable. Sincere thanks to Ralph DeVitto, Nicole Willmarth and Shaina Thompson for their steadfast support.
We are very appreciative of the wise advice, help and support provided by the IBTA’s Senior Advisors on this project: Jean Arzbaecher, Jenny Baker, Rosemary Cashman, Maureen Daniels, Stuart Farrimond, Anita Granero, Carol Kruchko, Sharon Lamb, Mary Lovely, Mary Ellen Maher, Christine Mungoshi, Sally Payne and Chris Tse.
We were delighted to welcome to this brain metastases Symposium representatives of leading patient advocacy, support and information organisations from the worlds of breast cancer, lung cancer, melanoma, kidney cancer and brain tumours. Thank you all so much for your presence at this Symposium (see the list of attendees at the end of this report)
We are also extremely fortunate to have engaged leading facilitator Kathy Redmond of Redmond Consulting who guided us through the Symposium with her lively moderating skills and experience. Thanks, Kathy!
A big thank-you to the oncology professionals, research specialists and medical society representatives who made time in their hectic work schedules to join us in Vienna: Tracy Batchelor, Manmeet Ahluwalia, Susan Chang, Matthias Preusser, Chas Haynes and Richard Price.
Thanks and appreciation go to Ms Christine Quah, Manager, Global Accounts, HelmsBriscoe for her invaluable help in finding and securing our Symposium venue at the InterContinental Wien Hotel.
Many thanks also to the InterContinental Wien Hotel’s Garry Loefgen (Head of Commercial in charge of Sales, Marketing, Revenue and Reservations) and Stefan Schmid (Group and Event Sales Executive) for their impeccable help and support with our accommodation and conference arrangements.
Warmest thanks to Edwina Kelly, our wonderful graphic designer for her help with this Symposium Report (edwina@edwinakellydesign.co.uk).
Special thanks to our report writer, Jackie Partarrieu. We’re delighted she could join us in Vienna.
We greatly appreciate the photographic skills of our Vienna-based photographer, Martin Hormandinger (https://www.mh-photography.at/). Thank you very much, Martin!
Last but by no means least, heartfelt thanks for IBTA Co-Director Gordon Oliver’s unfailing support and patience over the months of planning that went into this year’s Symposium, starting back in the depths of the pandemic in 2020/2021.
The International Patient Advocacy Symposium on Brain Metastases, a project of the International Brain Tumour Alliance (IBTA) in collaboration with the American Brain Tumor Association (ABTA), was a wholly independent activity and was conceived, planned and carried out by the IBTA and the ABTA. For details of the IBTA’s sponsorship and transparency policies, please see www.theibta.org
INTERNATIONAL BRAIN TUMOUR ALLIANCE
with the cooperation and collaboration of the
Convening, learning and collaborating for improved outcomes and greater hope for people with metastatic brain tumours.
The Intercontinental Wien Hotel, Vienna, Austria
Evening of Saturday 24th and full day on Sunday, 25th June 2023
With representation from: Society for Neuro-Oncology (SNO), Dana Farber/Harvard Cancer Centre/Brigham and Women’s Hospital, Medical University of Vienna, Miami Cancer Institute, European Cancer Organisation (ECO), ALK Positive UK, Central Brain Tumor Registry of the United States (CBTRUS), Europa Donna, Inspiration Family, GO2 for Lung Cancer, International Kidney Cancer Coalition (IKCC), Lung Cancer Europe (LuCE), LUNGevity Foundation, Melanoma Research Foundation (MRF), Metastatic Breast Cancer Alliance (MBCA)
DAY 1 - SATURDAY, 24TH JUNE 2023
REGISTRATION AND WELCOME DINNER
13:00 to Arrival at the InterContinental Wien Hotel, Vienna and All participants
18:00 registration for participants attending the 2023 International Patient Advocacy Symposium on Brain Metastases
19:00 to WELCOME BUFFET DINNER in The Parlor Restaurant at the All participants 21:00 InterContinental Wien Hotel (Dress: smart casual)
DAY 2 - SUNDAY, 25TH JUNE 2023
PLEASE NOTE: All Symposium sessions today will take place in the hotel Ballroom (Ballsaal) Sections 5 and 6
SYMPOSIUM WELCOME
08:30 to Welcome and brief introductions of all participants
Kathy Oliver (International Brain Tumour Alliance/IBTA, UK), Ralph DeVitto (American Brain Tumor Association/ABTA, US), Kathy Redmond (Redmond Consulting, Switzerland)
Kathy Redmond (Redmond Consulting, Switzerland) 09:00 All Summit participants (30 mins)
Report of the International Patient Advocacy Symposium on Brain Metastases, Vienna, Austria – 24th to 26th June 2023
09:00 to SYMPOSIUM SESSION 1 – SETTING THE SCENE:
Chair: Ralph DeVitto (American Brain 11:00 Presentations by patient advocacy groups to briefly Tumor Association/ABTA, US) (120 minutes) address some of these topics:
• What are organisations doing in the area of brain metastases?
• How involved are organisations in focussing on areas of importance to patients with brain metastases? Is this a new area of advocacy for them?
• Are organisations planning to increase their focus on brain metastases patients in the future?
• What would be necessary for organisations to be more involved (ie access to more/better statistics, sharing best practices, ready-made support material/resources)?
• What are the top three unmet needs of the brain metastases community?
09:00 to 09:25 (25 mins): Breast cancer brain metastases Ellen Verschuur (Europa Donna, Italy) (10 minutes per speaker X 2 = 20 minutes plus 5 minutes Medha Deoras Sutliff (Metastatic Breast for Q&A) Cancer Alliance/MBCA, US)
09:25 to 09:50 (25 mins): Lung cancer brain metastases
Marjo Forsblom (Lung Cancer Europe/LuCE, Finland) (10 minutes per speaker X 2 = 20 minutes plus 5 minutes
Amy Moore (LUNGevity Foundation, US) for Q&A)
09:50 to 10:00 (15 mins): Melanoma brain metastases
Amanda Sisco (Melanoma Research Foundation, US) (10 minutes per speaker X 1 = 10 minutes plus 5 minutes for Q&A)
10:00 to 10:15 (15 mins): Kidney cancer brain metastases
Berit (Birdie) Eberhardt (International Kidney (10 minutes per speaker X 1 = 10 minutes plus 5 minutes Cancer Coalition/IKCC, Germany) for Q&A)
10:15 to 11:00 (45 mins): Further group discussion and Ralph DeVitto (American Brain Tumor Association/ABTA, US) summary of the session Kathy Redmond (Redmond Consulting/Switzerland) All participants
11:00 to COFFEE/TEA/REFRESHMENT BREAK AND NETWORKING All participants 11.30 in the Ballroom (Ballsaal) Foyer (30 mins)
SYMPOSIUM SESSION 2 – PRESENTATIONS
11:30 to SETTING THE SCENE: Presentations by clinicians and 12:45 others on the current state of treatment for brain metastases in the US and Europe, including barriers to treatment (10 mins for each presentation followed by 5 mins for Q&A)
USA perspective
11:45 to 12:00: Clinical guidelines on brain metastases; disparities in care in community centres versus academic institutions in the US
Chair: Nicole Willmarth (American Brain Tumor Association/ABTA, US)
Manmeet Ahluwalia (Miami Cancer Institute, US)
12:00 to 12:15: ABTA survey results: cross-sectional survey Nicole Willmarth (American Brain Tumor Association of US patients, caregivers and physicians on the diagnosis /ABTA, US) and treatment of brain metastases [from any solid tumour]
European perspective
Matthias Preusser (Medical University of Vienna, 12:15 to 12:30 Overview of the brain metastases situation Austria) in Europe in terms of current state of treatment, policy issues, barriers to treatment, etc
12:30 to 12:45: European Cancer Organisation’s results of Richard Price (European Cancer Organisation/ECO, a survey of healthcare professionals in Europe and the Belgium) United States on unmet needs of non-small cell lung cancer (NSCLC) patients with brain metastases
12:45 to GROUP PHOTOGRAPH
13:45 LUNCH in The Parlor Restaurant at the InterContinental (60 mins) Wien Hotel
All participants
SYMPOSIUM SESSION 3 – THE CHALLENGES OF Facilitator: Kathy Redmond (Redmond Consulting, BRAIN METASTASES Switzerland)
13:45 to The landscape of brain metastases and the current Carol Kruchko (Central Brain Tumor Registry 14:05 challenge of tracking true incidence of the United States/CBTRUS, US)
14:05 to THE WORLD CAFÉ: “The World Café is an easy-to-use
Table moderators: 16;00 structured conversational process intended to facilitate open 1. Debra Montague (ALK Positive, UK) (115 mins) discussion, and link ideas within a larger group to access 2. Medha Deoras Sutliff (Metastatic Breast Cancer the “collective intelligence” or collective wisdom in the Alliance,/MBCA, US) room.” (Juanita Brown and David Isaacs, co-founders of 3. Amy Kampschroeder (GO2 for Lung Cancer, US) The World Café). 4. Mary Lovely (International. Brain Tumour Alliance/IBTA, UK)
All participants
16:00 to COFFEE/TEA/REFRESHMENT BREAK AND NETWORKING
16:30 in the Ballroom (Ballsaal) Foyer (30 mins)
SYMPOSIUM SESSION 4 – ROUNDTABLE DISCUSSION Facilitator: Kathy Redmond (Redmond Consulting, Switzerland)
16:30 to Working together to improve the treatment and care of All participants 17:45 people with brain metastases. Consensus on priority collaborative activities: what structures are needed to coordinate collaborative efforts to improve outcomes for people with brain metastases?
17:45 to SYMPOSIUM WRAP-UP/END
18:00
Kathy Oliver (International Brain Tumour Alliance/IBTA, UK)
Ralph DeVitto (American Brain Tumor Association (15 mins) /ABTA, US)
Nicole Willmarth (American Brain Tumor Association /ABTA, US)
EVENING AT LEISURE (own arrangements)
09:00
DEPARTURES FROM VIENNA
All participants OR
Join the IBTA World Summit of Brain Tumour Patient Advocates starting at 09:00 on Monday, 26th June. On the morning of Monday, 26th June, there will be two follow-up plenary presentations at the Summit on the findings of the International Patient Advocacy Symposium on Brain Metastases which took place on 25th June. There will also be networking opportunities for brain tumour patient advocates, and patient advocates from the breast, lung, melanoma and kidney cancer communities to get to know each other.
The first ever International Patient Advocacy Symposium on Brain Metastases took place on 25 June 2023 in Vienna, Austria.
The Symposium was an initial attempt to bring together patient advocacy leaders, eminent healthcare professionals and relevant medical societies from the worlds of breast cancer, lung cancer, brain tumours, kidney cancer and melanoma. Thirty-one participants from ten countries (Austria, Belgium, Finland, Germany, Mongolia, Switzerland, The Netherlands, Ukraine, United Kingdom, and United
States) gathered to focus on a substantial and growing area of unmet need: brain metastases.
The thought provoking and deliverable focused international Symposium organised by the International Brain Tumour Alliance (IBTA) with the collaboration of the American Brain Tumor Association (ABTA), aimed to find ways to advance research and improve outcomes and quality of life for brain metastases patients and their families and caregivers.
Together, participants tried to develop a new understanding of the challenges of brain metastases and discussed ways to improve the situation for people whose lives have been touched by metastatic cancer.
The one-day symposium included:
■ A keynote presentation on “The landscape of metastases and the current challenge of tracking true incidence”.
■ Presentations by patient advocacy experts representing a range of cancers that metastasise to the brain.
■ Presentations by healthcare professionals on the current treatments for brain metastases.
■ A World Café session.
■ A roundtable session on recommendations, next steps, and deliverables.
At the end of the day, actionable steps were proposed to meet the needs of patients with brain metastases, and their caregivers.
Attendees of the International Patient Advocacy Symposium on Brain Metastases committed to continue working together to implement ideas and actions that will improve outcomes and quality of life for people with metastatic brain tumours.
Kathy Oliver, Chair of the International Brain Tumour Alliance (IBTA) welcomed participants and explained how, coming from the world of primary brain tumours (cancers starting in the brain) she realised that people with brain metastases (cancer starting somewhere else in the body and spreading to the brain) have unique challenges. Together with Ralph DeVitto, CEO of the American Brain Tumor Association (ABTA), IBTA decided to do something about these unmet needs.
Kathy Oliver and Ralph DeVitto invited Symposium participants to collaborate in shedding light on the scope of issues faced by people with brain metastases. They also encouraged the attendees to work together in building a consensus and action plan across disease areas.
Organisations explained what they are doing around brain metastases and pointed out the top unmet needs of patients
Chair: Ralph DeVitto - CEO, American Brain Tumor Association (ABTA)
Top line message: there is a pressing need for a multidisciplinary approach, more clinical trials, more flexible inclusion criteria, and better screening
Ellen Verschuur (past president and current board member)
described the activities of Europa Donna, a European coalition of 47 member organisations, all focused on breast cancer. Their goal is to ensure that all European women with breast cancer have access to accurate information, quality screening, diagnosis, and treatment. She emphasised the importance of advocating for better personalised treatment and early detection. Europa Donna engages in various efforts to achieve their goals, including providing information, educating advocates, participating in research programs, and promoting awareness for metastatic breast cancer.
One example of their advocacy work was a joint letter calling on
policy makers to prioritise metastatic or advanced cancer services in the European Parliament’s special committee on the Europe’s Beating Cancer report and the European Commission’s Europe’s Beating Cancer Plan. Europa Donna also has a user-friendly website that offers informative content (including information on metastatic breast cancer), conferences, and advocacy perspectives on issues such as returning to work. The organisation also uses social media, publications, and campaigns to disseminate reliable information and support services at the European level.
The organisation conducts surveys to gather feedback from breast cancer patients and advocates, highlighting issues such as the lack of data, patients’ need for social and economic support, and the limited access to innovative treatments.
Europa Donna also organises webinars on various topics related to breast cancer, including research, communication, exercise during treatment, and the financial impact of the disease. They emphasise the importance of an open communication approach and aim to improve local and national services based on the data and feedback they receive.
The organisation actively participates in research, particularly focusing on understanding the metabolic aberrations and challenges related to brain metastases. They advocate for a multidisciplinary approach, expertise in healthcare, and support systems that connect patients, families, caregivers, and professionals. Ultimately, their goal is to improve the lives of breast cancer patients by adding life to their days, not just days to their life.
Overall, Europa Donna is dedicated to ensuring that all European women with breast cancer receive the necessary support, information, and treatment options, and the organisation works tirelessly to advocate for better care and outcomes.
the
Medha Deoras Sutliff from the Metastatic Breast Cancer Alliance (MBCA, US) presented the initiatives and efforts of her organisation, as well as the importance of addressing brain metastases in breast cancer patients.
The Metastatic Breast Cancer Alliance is a unique coalition in the United States that brings together patient advocates, non-profit organisations, and the pharmaceutical industry to improve the quality and quantity of life for those living with metastatic breast cancer. They have four strategic goals:
1. Research
2. Making clinical trials more patient centric
3. Equitable access to standard of care
4. Integrating quality of life.
Medha Deoras Sutliff highlighted the significance of brain metastases in breast cancer patients, with approximately 10 to 15% of individuals with metastatic breast cancer developing brain metastases and 20 to 25% of triple negative breast cancer patients developing brain metastases. She mentioned one of their coalition partners, Living Beyond Breast Cancer, which is a trusted resource for breast cancer information in the US and provides specific programmes and support for patients diagnosed with brain metastases.
The Marina Kaplan Project, named after a patient advocate who passed away from brain metastases, aims to ensure clinical trial design with less restrictive eligibility criteria. The project also focuses on increasing the quality of basic science research, expanding the number of clinical trials, and incorporating trial endpoints that measure quality of life and survival. The project includes a working group consisting of patient advocates, industry representatives, and non-profit representatives. Together they engage in various activities such as educational sessions, meeting with clinical trial
investigators and sponsors, and encouraging pharma advisory group participation by patient advocates.
Medha Deoras Sutliff introduced the MBCBrainMets.org website, which was created in 2022 by patient advocates in collaboration with a scientific and medical advisory committee. The website was conceived as a one-stop hub with cutting-edge information and community support. As well as patient stories, it has a clinical trials search tool specifically for breast cancer patients with brain metastases to enable access to innovative treatments. The goal of the site is to provide direction, clarity, and support tailored to patients’ needs.
Moving forward, the MBCA aims to continue participating in conferences, adding content to the MBCBrainMets.org website, and hosting webinars to share knowledge and best practices among different cancer organisations.
Medha Deoras Sutliff emphasised the importance of addressing unmet needs, such as:
■ including patients with progressing brain metastases in clinical trials (not just those with stable metastases)
■ advancing imaging tools for identifying tumour necrosis vs tumour progression
■ greater focus on brain metastases and leptomeningeal disease in trials and drug development
■ increased screening for brain metastases in breast cancer patients.
She concluded with a call to action, highlighting the progress made in extending and improving the lives of metastatic breast cancer patients. She urged more people to advocate for these patient populations and emphasised that there is hope for individuals living with brain metastases from breast cancer, with many experiencing extended survival.
Medha Deora Sutliff describes the progress made in extending the lives of metastatic patients
Top line message: more research, funding, and awareness are urgently needed
Marjo Forsblom from LuCE (Lung Cancer Europe) acknowledges that lung cancer initiatives are not as advanced as those in breast cancer, despite lung cancer metastasising to the brain more frequently. LuCE aims to be a voice for all Europeans with lung cancer by collaborating with members and stakeholders. Twentythree countries are represented in their efforts. They focus on advocating to de-stigmatise the disease and on empowering their members to have a say in their respective countries. While LuCE hasn’t specifically addressed brain metastases, their members do provide information and guidance on medical options for brain metastases. The organisation conducts annual surveys and publishes reports on lung cancer, including quality of life and care challenges. However, brain metastases haven’t been specifically addressed in these reports, and Forsblom suggested adding questions on this topic in future surveys.
LuCE aims to raise awareness and share information about brain metastases in the future by developing educational materials such as leaflets and videos. They have various channels to disseminate
information, including education and capacity-building programmes. Marjo emphasised the importance of understanding the challenges faced by patients and caregivers and the need for access to upto-date medical information and expertise. She also highlighted the lack of data on brain metastases from lung cancers, and the importance of cooperation and sharing knowledge with other organisations.
The unmet needs expressed by lung cancer patients include:
■ early detection and diagnosis
■ advocating for MRI scans and screenings for all lung cancer patients
■ improved treatment options and access across Europe
■ addressing reimbursement issues for brain scans in certain countries
■ focusing on supportive care, quality of life, and end-of-life discussions.
Marjo Forsblom acknowledged that there is much work to be done to address the unmet needs of lung cancer patients, including those with brain metastases.
Marjo Forsblom (Lung Cancer Europe – LuCE) describes the unmet needs of lung cancer patients
The IBTA and ABTA were very saddened to hear that Marjo Forsblom passed away on Sunday, 22nd October 2023. The lung cancer organisation she represented at the Vienna Symposium – Lung Cancer Europe (LuCE) – paid tribute to Marjo by saying: “Marjo was a beautiful shining light in our community… Marjo was a wonderful, inspiring, and committed advocate who made a huge impact in our community. Marjo’s strength and passion will continue to drive our work advocating for all those impacted by lung cancer as she had done with such dedication in her lifetime. Marjo lived life to the end and her eloquent commitment to lung cancer advocacy will be greatly missed by everyone in the LuCE family.”
Amy Moore from the LUNGevity Foundation explains that lung cancer patients face the highest risk of developing brain metastases
Amy Moore, representing LUNGevity Foundation in the United States, said lung cancer remains a significant health concern worldwide. Among its various types, lung cancer patients face the highest incidence and risk of developing brain metastases, up to 25% of patients. Amy emphasised the urgent need to improve the lives of lung cancer patients with brain metastases through increased research, funding, and awareness.
Brain metastases significantly impact patients’ quality of life, she said, causing symptoms ranging from headaches to dizziness and fatigue. Unfortunately, treating brain metastases poses several challenges, including the lack of good preclinical models to understand the disease and difficulty in penetrating the blood-brain barrier for effective therapy. Patients with active brain metastases are often excluded from clinical trials, limiting access to potential lifesaving/life extending treatments.
A survey conducted by the ABTA and published in NeuroOncology Practice revealed that very few patients and caregivers believe the federal government in the United States is doing enough to address the unmet needs of brain metastases. Key priority areas identified for federal intervention include:
■ increased treatment and research funding
■ better insurance coverage
■ improved clinical trial inclusion criteria
■ faster drug and treatment approvals.
To address these issues, LUNGevity collaborates with patient advocates in creating a rolling document of unmet needs for the lung cancer community including leptomeningeal disease and determining when stereotactic radiosurgery (SRS) can be used instead of whole brain radiation therapy (WBRT).
Amy Moore concluded that it is essential to prioritise research into new treatments, provide ongoing financial and emotional
support for patients and caregivers, promote awareness that lung cancer metastasises to the brain, and educate doctors about brain metastases in lung cancer patients.
Top line message: there is a pressing need for early detection, better access to treatments and greater awareness
Amanda Sisco from the Melanoma Research Foundation explains their research efforts and calls for increased funding
Amanda Sisco, representing the Melanoma Research Foundation (MRF), in the United States, highlighted the organisation’s mission to eradicate melanoma through medical research, education, and advocacy. Among the critical research areas, brain metastases have been a focus of MRF’s summits, collaborating with over 50 leading industry providers and researchers to guide future research. They have held three summits on melanoma brain/CNS metastases and have printed reports summarizing the learnings from 2015, 2018 and 2021.
Through various initiatives, MRF addresses the unmet needs of melanoma patients with brain metastases. The foundation funds investigators at all stages, supporting research on prevention, early detection, tumour cell dormancy, therapy, and resistance. Specific
A packed programme with keynote presentations and roundtable discussions
topic proposals also include research on rare melanoma subtypes, such as mucosal and paediatric melanoma. Ocular and cutaneous melanoma have a larger propensity to metastasise to the brain thus more research is needed on those subtypes.
MRF emphasises patient education, producing materials on clinical trials and offering a clinical trial service with personalised assistance. They have also published research and hosted patient symposia, produced animated patient videos, and advocated for telehealth access to improve the patient experience and quality of life.
One of the key unmet needs identified is raising awareness that melanoma can spread to the brain. Despite the prevalence of brain metastases, there is still a lack of widespread knowledge among healthcare providers about this, which can hinder early detection and appropriate treatment.
MRF wants to continue collaborating with various organisations, such as the IBTA and ABTA, to work towards a future with improved melanoma research funding, increased access to telehealth, and greater awareness that melanoma can spread to the brain.
Top line message: better screening, data, and treatment are key to improving outcomes
Berit (Birdie) Eberhardt from the International Kidney Cancer Coalition (IKCC) calls for better screening, data and treatments
Berit (Birdie) Eberhardt, representing International Kidney Cancer Coalition (IKCC), shared the organisation’s interest in brain metastases and highlighted the urgent need for improved care for kidney cancer patients with brain metastases. She shared a moving story of a patient on his honeymoon, diagnosed with brain metastases, who became a driving force behind her efforts to address brain metastases in kidney cancer. She recalls how IKCC’s focus on bone metastases revealed significant gaps in treatment options, prompting IKCC’s interest in addressing brain metastases, which impact 2-15% of patients and pose substantial challenges.
In Birdie’s experience, brain metastases are a sensitive topic for patients due to issues with access and choice of treatment. Patients are often recommended whole-brain radiation (that carries early and late side effects) and not offered other treatment choices. Many patients face delays and uncertainty while waiting for care, indicating the pressing need for better approaches to brain metastases.
The IKCC wanted to close the knowledge gap of challenges and unmet needs of kidney cancer patients with brain metastases. It was
decided that a multidisciplinary approach based on insights from neurosurgical, medical, and radiation oncologists could help address this knowledge gap.
To this end, a multinational team of researchers affiliated with the International Kidney Cancer Coalition examined the literature together to figure out what existing management strategies work best. Additionally, 36 experts from six countries and 26 institutions participated in a survey study, answering 60 questions related to dilemmas in the diagnosis, screening, surveillance, and treatment of kidney cancer-related brain metastases. The findings revealed valuable insights for screening, diagnosis, and treatment of brain metastases in kidney cancer patients.
The top unmet needs identified include screening and diagnosis, particularly in regions where access to MRIs is limited. GP and oncologist education is crucial to raise awareness and ensure patients receive appropriate screenings. The survey resulted in an interdisciplinary consensus of the management of brain metastases in patients with renal cell carcinoma published in the Cancer Journal for Clinicians. On the basis of a literature review and survey results, authors built algorithms for the management of brain metastases in patients with kidney cancer.
Experts recommended obtaining a routine brain MRI even if kidney cancer patients do not have neurological symptoms. Treatment options were suggested including surgery. Experts favoured avoiding whole-brain radiation and promoting different radiation methods for patients with brain metastases. Additionally, systemic treatment and support for patients dealing with brain metastases, including information, treatment, and symptom management, are vital aspects to address.
To improve care for kidney cancer patients with brain metastases, IKCC calls for better access to statistics and resources that can be adapted to different countries. Collaboration with local patient organisations and involving caregivers in the research and care process is also crucial.
Birdie Eberhardt voiced a call to action: the unmet needs of kidney cancer patients with brain metastases demand urgent attention and coordinated efforts from healthcare professionals, organisations, and policymakers. By increasing awareness, education, and access to advanced treatments, she said, we can enhance the care and quality of life for patients facing this challenging aspect of kidney cancer.
Top line message: driving status for brain metastases patients create significant challenges; a change in regulations is needed
Debra Montague, representing the ALK Positive Patient Group in the United Kingdom, campaigns against arbitrary driving restrictions affecting brain metastases patients
Debra Montague, chair of ALK Positive patient group represents a population of ALK+ lung cancer patients. This is a rare form of lung cancer that impacts many patients under the age of 50. Debra brought up the issue of driving rights for patients with brain metastases. Currently this presents a significant challenge and has raised concerns from both patient and physician perspectives.
In the UK, patients with brain metastases face a disqualification from driving for two years, a decision that has been questioned due to its arbitrary nature and lack of expert input. Advocacy efforts have been made to shorten this disqualification period, aiming for better quality of life for patients who rely on driving for their daily activities.
The situation is different in the US, where driving is considered a state privilege, and the rules vary from state to state. However, driving restrictions are more related to the presence of seizures rather than brain metastases per se. Surveys conducted among brain metastases patients in the UK revealed that none of them experienced seizures, challenging the reasoning behind the driving disqualification.
The impact of driving restrictions on patients and their families is significant. Patients, particularly those with non-small cell lung cancer (NSCLC), are often young adults who need to transport children and themselves for various activities and work. Lack of access to public transport in certain areas further exacerbates
the issue, leading to social isolation and decreased quality of life. Patients fear becoming a burden for their caregivers.
Efforts to engage with organisations responsible for driving regulations, such as the Driver and Vehicle Licensing Agency (DVLA) in the UK, have been challenging but have resulted in some progress. The UK guidance on driving with brain metastases has been reduced from a two-year disqualification to twelve months. However, this decision lacks evidence, and there remains a need to advocate for more reasonable restrictions based on individual cases and medical evidence.
Stigma around brain conditions remains prevalent, adding to the burden for patients with brain metastases. Lack of understanding and knowledge from both the medical community and employers can result in patients feeling like a burden, impacting their confidence and independence.
To address the challenges, Debra Montague suggests that several actions can be taken:
1. Collaboration and education: encourage collaboration between medical professionals, legal experts, and patient organisations to create guidelines and educate physicians about driving restrictions and individual cases in patients presenting with brain metastases.
2. Occupational therapy: promote access to occupational therapy, physical therapy, and speech therapy to address quality of life issues and help patients regain independence.
3. Legal advice: provide physicians with legal advice and support in making driving recommendations for patients, reducing concerns about potential legal consequences.
4. Surveys and research: conduct more surveys and research to gather evidence on driving safety among brain metastases patients, debunking misconceptions, and challenging arbitrary decisions.
5. Public awareness: raise public awareness about brain metastases and reduce stigma to ensure patients receive the support and understanding they need.
The challenges surrounding driving rights (and return to work) for brain metastases patients are complex, but concerted efforts from the medical community, policymakers, and patient advocates can lead to positive change and improved quality of life for those affected.
Brain metastases present significant challenges for patients (and caregivers), with a multitude of unmet needs that must be addressed to improve their quality of life and treatment outcomes. During the discussions following Session 1 of the International Patient Advocacy Symposium on Brain Metastases, participants highlighted various issues faced by brain metastases patients, shedding light on the burden of symptoms and the lack of personalised care.
One major concern for brain metastases patients is the burden of symptoms associated with their condition. Symptoms can vary widely depending on the location and number of brain metastases, and they can significantly impact a patient’s ability to function independently. The fear of losing independence is a common struggle for these patients, and caregivers play a vital role in providing support and maintaining their loved ones’ quality of life.
Another significant challenge is the lack of consistency in treatment approaches. Physicians often face difficulties in deciding the best course of action. Guidelines and regulations can sometimes hinder their ability to make personalised treatment decisions. While guidelines can provide some level of standardisation, they may not always consider the individual circumstances of each patient.
A multidisciplinary approach involving various medical experts is essential to ensure patients receive the most effective and personalised treatment plan possible.
Furthermore, stigma remains an issue for patients with brain metastases. The condition is often misunderstood and hidden away, leading to additional emotional and psychological burdens
for patients and their families. Education and awareness campaigns aimed at both the public and employers are needed to combat stigmatisation and foster understanding and support for those affected by brain metastases.
The impact of brain metastases on driving rights (see previous page) is another pressing concern. Patients facing driving restrictions experience a loss of independence and isolation, particularly in locations with limited public transportation. Efforts to advocate for more reasonable driving restrictions based on individual cases and medical evidence are ongoing, aiming to improve patients’ quality of life.
Access to support services, such as occupational therapy, physical therapy, and speech therapy, is crucial to help patients cope with the challenges they face. These therapies can address the burden of symptoms, support patients’ independence, and improve their overall well-being and quality of life.
Additionally, it is essential to recognise that brain metastases patients are not solely burdened by the brain condition itself. Many patients also face the challenges of managing their systemic cancer and treatments, which can lead to fatigue and other symptoms that affect their daily lives.
Concluding Session 1, participants at the Symposium stressed that addressing the challenges and unmet needs of brain metastases patients requires a comprehensive and multidisciplinary approach. This involves providing personalised treatment plans, raising awareness about the condition and its impact, and offering support services that cater to the unique needs of each patient.
Setting the scene: patient advocacy groups, clinicians and advocacy experts from the US and Europe give their perspectives of the current state of treatment for brain metastases in Europe and the United States
Chair: Nicole Willmarth – ABTA Chief Mission Officer
Dr Manmeet Ahluwalia, from the Miami Cancer Institute in Florida (US) provided valuable insights into the US perspective on brain metastases. He explained that brain metastases, affecting over 200,000 patients annually in the United States, pose a significant clinical problem. He further said that lung cancer is the most common cause of brain metastases (50%), followed by breast cancer (15%), melanoma (10%), and kidney cancer (10%). Twentyfive percent of lung cancer patients have brain metastases at initial presentation and 80% of lung cancer patients surviving over two years will develop brain metastases.
Advances in therapeutics for primary cancers have increased patient survival rates, leading to a rise in brain metastases
incidence. Furthermore, clinical trials now often include patients with brain metastases, potentially providing them with better treatment options.
US National Comprehensive Cancer Network (NCCN) guidelines recommend brain MRI screening for lung cancer patients at the time of diagnosis of their primary cancer, as they are more likely to have developed brain metastases by then, compared to breast cancer patients for example, where brain metastases usually occur later in the disease progression.
Median overall survival for patients with brain metastases was 8-12 months but this is changing with improved treatments. The introduction of targeted therapies has dramatically improved
outcomes for lung cancer patients with genetic alterations like EGFR and ALK mutations. The response rates and duration of response for these patients have significantly increased with new-generation drugs, such as alectinib and lorlatinib, leading to better control of brain metastases.
Immunotherapy has also shown promise in treating brain metastases. Drugs like pembrolizumab have demonstrated comparable response rates in the brain and the rest of the body. However, PDL1 expression (“programmed cell death ligand 1” – a protein that plays an important role in the body’s immune system) in the brain is lower, indicating that not all immunotherapies may be equally effective in the brain and other parts of the body.
Manmeet Ahluwalia explained that the use of combination strategies, incorporating targeted therapies and radiation, is critical for better patient outcomes. Neurological functions must also be closely monitored in patients undergoing combination therapies. New “designer drugs” could mean that, ultimately, brain radiation might be able to be skipped completely.
He further said that, as indicated in the ABTA survey published in Neuro-Oncology Practice, disparities in care exist between academic and community centres in the US. Academic centres generally offer better access to genomic testing, multidisciplinary management, advanced technologies, neurocognitive testing, and clinical trials. Patients with complex cancers are encouraged to seek treatment at academic centres for comprehensive care.
Additionally, exciting advances in focused ultrasound, enabling non-invasive disruption of the blood-brain barrier, hold promise for targeted drug delivery to brain metastases.
Overall, the US perspective on brain metastases emphasises the importance of personalised treatment approaches, multidisciplinary care, and the continuous pursuit of novel therapies to improve patient outcomes and quality of life.
Brain metastases pose significant challenges for cancer patients, caregivers, and physicians. The American Brain Tumor Association (ABTA) recently conducted a survey to shed light on the unmet
needs and experiences of those affected by brain metastases. Nicole Willmarth, Chief Mission Officer at ABTA, who presented the survey results, emphasised the opportunities to improve patient and physician understanding, and to find better treatments for these conditions.
The ABTA is dedicated to enhancing the understanding and treatment of brain tumours, including primary brain tumours and brain metastases. In 2018, the ABTA recognised the lack of awareness and limited treatment options for brain metastases patients, leading them to launch the Metastatic Brain Tumor Collaborative. The initiative aims to identify needs, raise awareness, and accelerate research in this area.
The collaborative launched a first-of-its-kind survey - the results of which were published in 2021 - of patients, caregivers and physicians on the diagnosis and treatment of brain metastases. The methodology involved an online quantitative survey conducted between 2018 and 2019. Three distinct groups were surveyed: cancer patients diagnosed with brain metastases, caregivers of brain metastases patients, and physicians treating such patients. The survey results highlighted some crucial gaps and discrepancies that were published in Neuro-Oncology Practice
One significant finding was a lack of effective communication between physicians and patients regarding brain metastases. While 77% of patients stated they knew little to nothing about brain metastases before their diagnosis, 77% of physicians claimed to
have discussed the risk of brain metastases within the first three visits after a primary cancer diagnosis. This disconnect presents an opportunity for better communication and timely education for both patients and healthcare professionals.
The survey also revealed consistent symptoms reported by patients and caregivers, with headaches, dizziness, and balance issues being the most prevalent. Rapid identification of these symptoms could lead to earlier diagnosis and intervention. Treatment decisions were another focal point in the survey. Patients and caregivers considered treatment success, quality of life, and potential side effects as the top factors influencing their choices. Physicians in academia primarily recommended stereotactic radiosurgery (SRS) for brain metastases treatment. However, community or private practice physicians tended to recommend whole brain radiation treatment more frequently, prompting the need for guidelines, educational initiatives, and access to the most effective treatments.
Clinical trials were also examined in the survey. Surprisingly, only 23% of physicians advocated for their brain metastases patients to engage in clinical trials. The ABTA aims for a higher rate of clinical trial participation and wishes to see more brain metastases patients considered for trials, even those people with active metastases.
Overall, the ABTA survey provided valuable insights into the challenges faced by brain metastases patients and their caregivers. The findings underscore the importance of improved communication between patients and physicians, early symptom recognition, and access to the most suitable treatments.
Overview of the brain metastases situation in Europe: current treatments, challenges,
Professor Matthias Preusser, from the Medical University of Vienna, provided an overview of the European perspective on brain metastases treatment, policy issues, and barriers to treatment. Europe’s diversity makes it challenging to have an overarching perspective, but guidelines have been developed by organisations
like the European Association of Neuro-Oncology (EANO) and the European Society for Medical Oncology (ESMO), offering a good idea of what should be done. However, the application of these guidelines and research efforts still faces challenges.
Matthias Preusser said that one major challenge is therapeutic nihilism, where some healthcare providers may believe that brain metastases are untreatable, leading to limited options offered to patients.
Inequality in access to care is also evident, especially in Eastern European countries, where patients often lack adequate treatment options and may seek help elsewhere. Fragmentation of responsibility for payment and different medical specialties often lead to varying treatment approaches, hindering optimal cooperation.
Despite the challenges, there are opportunities for improvement. Advances in understanding the biology of brain metastases have shown that central nervous system (CNS) metastases can be treated with modern drugs and radiation therapies. Best practice examples of successful clinical trials for brain metastases are emerging, and community trial methodologies are evolving. Collaboration and lobbying efforts have led to increased interest from the pharmaceutical industry in supporting brain metastases research.
Matthias Preusser suggested that there is a real opportunity to defeat brain cancer together, and as part of that, we are witnessing an evolving clinical trial methodology. We need to reconsider eligibility criteria, how to measure responses, and other important factors. The pharmaceutical industry has not shown much interest in these trials, but there have been positive developments with
companies who now recognise the importance of clinical research regarding brain metastases.
There are study groups in Europe, such as the European Organisation for Research and Treatment of Cancer (EORTC). Currently, the EORTC is implementing a study group platform for brain metastases research at a European level, which is a promising sign. Matthias Preusser said that clinicians have been lobbying for years to focus on drugs that are effective in treating brain metastases.
A significant achievement is the publication of a clinical trial, called TUXEDO-1 focused on treating patients with HER2-positive breast cancer and brain metastases with trastuzumab deruxtecan. The trial received great attention due to the specific enrolment of patients with active brain metastases. Investigators witnessed a positive response to the treatment, demonstrating that trials in this challenging population can be successful.
While accruing patients for certain cohorts can be challenging, research should aim for larger randomised trials to compare different treatments. Collaborative efforts, such as those at the EORTC, will play a crucial role in setting up these trials and driving progress.
Matthias Preusser said that the main challenge lies in the heterogeneity of the disease, the patients, and the physicians involved. Surgeons, radiotherapists, medical oncologists, and researchers have different approaches. Additionally, the regulatory landscape varies across European countries. The solution lies in collaboration to improve patient outcomes, educating both patients and physicians, and advocating for increased research efforts. Resilience also needs to be built to overcome the challenges and
make significant strides in this field.
Matthias Preusser emphasised the need to invest in understanding brain metastases on a biological level and conducting prospective clinical research with high-quality methodology. This includes enrolling patients with active forms of metastases in clinical trials to assess treatment efficacy.
In conclusion, he said, the heterogeneity of brain metastases and the various challenges posed by different countries and medical specialties require collaborative efforts to improve outcomes for patients.
The European Cancer Organisation (ECO) conducted a survey to gain valuable insights into the unmet needs of non-small cell lung cancer (NSCLC) patients with brain metastases. Richard Price, Head of Policy at ECO, presented his organisation and shared the survey results. ECO focuses on collaboration and brings together 42 cancer organisations and 21 cancer patient organisations to improve outcomes through multidisciplinarity, collaboration and professionalism.
Among other resources, ECO has published the European Code of Cancer Practice, a patient-centred statement of the core requirements for good clinical cancer practice.6
The NSCLC survey, conducted in collaboration with Ipsos Mori, gathered responses from 350 healthcare professionals, including medical oncologists, clinical oncologists, radiation oncologists, and haemato-oncologists. It aimed to shed light on the challenges faced by patients with brain metastases and how healthcare professionals perceive their needs. The survey highlighted some key points:
■ Top symptoms: healthcare professionals reported common symptoms experienced by patients with brain metastases, such as headaches, brain swelling, memory loss, and speech difficulties.
Richard Price said patients, caregivers and healthcare professionals’ perspectives differ regarding the need for emotional support and information provision
These symptoms add to the burden already faced by patients alongside their lung cancer diagnosis.
■ Coordination of care: healthcare professionals recognised the challenges associated with coordinating care for these patients, with 73% identifying it as a significant issue. The complex care pathway often leaves patients feeling that they don’t receive enough time from healthcare professionals to address their needs adequately.
■ Need for information and support: providing quality and timely information and support to patients emerged as a significant problem according to the survey results. Patients and caregivers were looking for more comprehensive information to navigate their journey effectively. The timing for receiving relevant information does not seem to be currently adequate.
■ Emotional distress: emotional distress was a strong theme identified in the survey. Patients’ and caregivers’ emotional needs were not adequately addressed, leading to feelings of uncertainty and anxiety.
■ Discrepancies in perspectives: when comparing healthcare professionals’ perspectives with those of patients and caregivers, some differences surfaced, especially concerning emotional support and information provision. Patients felt that healthcare professionals may miss the mark on emotional support, and this aspect warrants further discussion.
To further understand the patient perspective, 12 NSCLC patients and their caregivers were interviewed, revealing alignment with the
survey results from healthcare professionals in most areas. However, patients emphasised the significance of emotional support and expressed the need for healthcare professionals to be attentive to emotional needs throughout the journey, not just during the initial diagnosis.
Patients with metastatic cancer experience sudden and complex symptoms, which can be overwhelming for them and their caregivers. The process of navigating through appointments and seeing various specialists adds to the burden they face. The role of nurses in delivering information and support was highlighted as pivotal.
Richard Price said that addressing the unmet needs of NSCLC patients with brain metastases requires concerted efforts and political attention. The survey results present an opportunity to influence policy reform, such as the current pharmaceutical legislation reform in Europe, which aims to incentivise addressing unmet medical needs.
In addition to policy changes, there is a call for measuring issues related to access to psychosocial care. ECO, said Richard Price, is actively involved in initiatives to bring attention to these issues and intends to involve national politicians to further the cause. Collaborative efforts are encouraged.
In conclusion, the survey conducted by ECO sheds light on the unmet needs of NSCLC patients with brain metastases, emphasising the importance of addressing emotional support and the timely provision of information. By engaging policymakers, healthcare professionals, patients, and caregivers, progress can be made to improve the quality of care and support for this vulnerable patient population.
Carol Kruchko, founder, President, and Chief Mission Officer of the Central Brain Tumor Registry in the United States (CBTRUS) discussed the challenges of tracking and measuring the incidence of brain metastases in the US.
Brain metastases are secondary brain tumours that result from cancer cells spreading from other parts of the body. These tumours have a significant impact on patient morbidity and survival. However, obtaining accurate incidence estimates for brain metastases is difficult due to varying study methodologies and the lack of mandated population-based reporting of data on metastatic tumours in the US.
Carol Kruchko’s presentation covered the background of cancer registration in the United States, highlighting population-based cancer registries as the primary data source. She emphasised that brain metastases are not systematically collected, unlike primary cancers, which hinders the accurate tracking of their true incidence.
CBTRUS plays a crucial role in providing primary brain and central nervous system tumour statistics for the entire US. It collects data from various sources, including The Surveillance, Epidemiology and End Results (SEER) programme of the National Cancer Institute in
the US and the Centers for Disease Control and Prevention’s (CDC) National Program of Cancer Registries. CBTRUS then publishes yearly reports and research papers based on this data. CBTRUS also works with the North American Association of Central Cancer Registries (NAACCR) that sets standards for registries in the US and Canada.
Carol Kruchko explained the difficulties in estimating the true incidence of brain metastases. Brain metastases can occur at any time after a primary cancer diagnosis, making it challenging to track and measure their frequency. The presentation showcased CBTRUS’s studies on synchronous brain metastases (detected within two months of the primary cancer diagnosis). These studies indicate that lung cancer has the highest frequency of synchronous brain metastases, followed by others such as breast and melanoma (skin cancer).
The presentation concluded by Carol Kruchko emphasising the need for collaborative efforts between the research community and cancer registries to develop standardised variables and practices for collecting data on metastatic brain tumours. The goal is to have accurate population-based data on all metastatic brain tumours to improve diagnosis, treatment, and outcomes for patients with brain metastases. Overall, Carol Kruchko’s presentation highlighted the importance of addressing the challenges in tracking brain metastases’ true incidence and the potential impact on cancer-related research and patient care.
Report of the International Patient Advocacy Symposium on Brain Metastases, Vienna, Austria – 24th to 26th June 2023
Report
Facilitated by Kathy Redmond (Redmond Consulting)
The World Café method is “a simple, effective and flexible format for hosting large group dialogue. The process begins with the first of three or more twenty-minute rounds of conversation for small groups of four (five maximum) people seated around a table. At the end of the twenty minutes, each member of the group moves to a different new table.” Each table discusses a different topic, building on the comments of the previous group sitting at that table.
Attendees at the IBTA/ABTA brain metastases Symposium were split into groups along these lines to discuss the four main areas of challenges that were identified in that morning’s sessions. Each person visited three tables for 20 minutes at a time. Each table had a “table host” who remained at the table and moderated
discussions. It was also the “table host’s” role to brief new arrivals at their table about what happened in the previous round of discussions. The four topics for the World Café session covered brain metastases and:
1. Access (to treatment and care)
2. Patients and caregivers
3. Research
4. Diagnosis and treatment
Structured discussion allows consensus-building
Access to clinical trials for brain metastases patients and the availability of MRI imaging in certain countries emerged as key issues. Disparities in access and treatment between academic and non-academic centres were also highlighted.
After discussion, Symposium World Café participants proposed the following actions:
1. Influence regulators for increased and more flexible inclusion in clinical trials: Establish a working group comprising patients, payers, and physicians to advocate for the inclusion of brain metastases patients (stable or progressive) in clinical trials. Prepare a white paper backed by strong data to strengthen the argument.
2. Survey clinicians globally: collect data on the number of patients denied access to trials and identify the extent of exclusion across various clinical areas.
3. Templates for screening protocols: develop templates for brain metastases screening to aid in the setup of protocols, reducing the burden for clinicians.
4. Financial incentives: explore the possibility of developing a financial argument to encourage pharmaceutical companies to include brain metastases patients (stable or progressive) in their trials.
5. Reimbursement schemes: advocate for reimbursement schemes that incentivise referrals to centres of excellence, ensuring brain metastases patients receive the best care available.
Amy Kampschroeder of GO2 for Lung Cancer in the United States leads a discussion on finding ways to improve the situation of brain metastases patients
World Café participants emphasised the need for educational materials and support for patients and caregivers. The lack of highquality information and literacy barriers were also highlighted.
After discussion, Symposium World Café participants proposed the following actions:
1. Develop educational materials: create educational materials addressing issues such as fear, lack of hope, and other areas of concern for brain metastases patients. Involve patient perspectives through focus groups.
2. Multimodal education: provide educational materials in various modalities, such as videos and written material in clear language, catering to different demographics and geographies.
3. Symptom checklist: create a symptom checklist for brain metastases to help patients identify warning signs.
4. List of resources: list of available support services (physiotherapy, transport, psychological support) for caregivers and patients, to ease their day-to-day lives and decrease stress.
5. Peer-to-peer connections: establish peer-to-peer networks to enable patients and caregivers to learn from each other and provide necessary support. Train volunteers to deal with difficult questions and to know where to find answers or how to signpost patients to relevant sources of information.
6. Establish patients’ rights code: develop an international code outlining the essential rights and requirements for brain metastases patients, similar to the European Code of Cancer Practice and The Brain Tumour Patients’ Charter of Rights
More funding, research, education, and awareness-building are essential
The lack of comprehensive data on brain metastases incidence, funding, the need for inclusive clinical trial designs, and dealing with stigma were key issues discussed at the research World Café table.
After discussion, Symposium World Café participants proposed the following actions:
1. Data collection: gather data to identify the size and scope of brain metastases issues, enabling policymakers and funding agencies to understand the urgency and needs.
2. Patient advocacy for funding: train patient advocates to petition for funding and set an agenda to support brain metastases research.
3. Collaboration and awareness: foster collaboration among different organisations and stakeholders worldwide to raise awareness and advocate for brain metastases research.
4. Mandate brain metastases data: require pharmaceutical companies to provide meaningful data on brain metastases for drugs seeking approval.
World Café participants emphasised the lack of screening and timely diagnosis, communication gaps, and limited treatment options as the primary challenges in this area.
After discussion, Symposium World Café participants proposed the following actions:
1. Research and awareness: conduct prospective studies and raise funds for research to establish the benefits of early screening and increase awareness among patients and healthcare providers.
2. Improved communication: educate patients and physicians about brain metastases and the importance of screening during consultations between primary care providers and oncologists.
3. Screening process centralisation: develop a centralised screening process to reduce costs and improve accessibility.
Addressing the challenges in brain metastases requires collaborative efforts between patients, caregivers, healthcare providers, regulators, and policymakers. To achieve progress, data collection is essential. Advocacy for more funding, research, education, and awareness-building are essential. Working together, we can improve access to clinical trials, enhance patient and caregiver support, drive research, and improve early diagnosis and treatment options for those affected by brain metastases.
Facilitator - Kathy Redmond (Redmond Consulting)
The roundtable discussion aimed to explore feasible, practical ideas and action points to address brain metastases collectively as an international consortium of patient advocacy organisations concerned about brain metastases.
Attendees discussed the importance of collaborative efforts in tackling challenges that individual organisations cannot address alone. Attendees also emphasised the need to prioritise and implement achievable ideas promptly to make a real impact.
During the roundtable, several ideas and action points were proposed. Here are some of the prominent ones:
1. Mapping exercise and repository: participants agreed on creating a mapping exercise and repository to collect and share information related to brain metastases. This repository would be accessible to patient advocates, physicians, policy makers and industry, promoting multistakeholder collaboration.
2. Funding brain metastases research: ABTA volunteered to support and create a pool of funds for global brain metastases research. Other organisations were invited to join and contribute.
3. Guidelines: participants suggested developing clear guidelines for brain metastases screening (across all primary tumour sites) and collaborating with medical societies to ensure their implementation. The importance of collecting and understanding global brain metastases data was highlighted.
4. Evidence generation for guidelines: it was proposed to form a think tank or working group to identify study designs needed to generate evidence for the development of screening guidelines.
5. Survey on brain metastases needs: participants discussed conducting a survey across brain metastases groups from different primary sites, to understand the needs of patients, caregivers, and clinicians. This survey would provide valuable information and enable recommendations based on real-world intelligence.
6. Writing a position paper or white paper: this paper would state the unmet needs of brain metastases patients, to raise awareness and advocate for addressing the challenges and gaps in care.
7. Advocacy for mandated inclusion of a brain metastases arm in brain tumour clinical trials: participants emphasised advocating for the inclusion of brain metastases in clinical trials along with primary brain tumour trials and pushing regulators to mandate these inclusions. It was suggested to study the successful Paediatric Investigation Plan (PIP) structure in clinical trials.
8. Pharmaceutical companies and regulators: participants acknowledged the need to engage with pharmaceutical companies and regulators to ensure appropriate drug development, inclusion of patients with progressive brain metastases in clinical trials, and approvals for brain metastases treatments.
9. Social media campaign: a proposal for a social media campaign to raise awareness about brain metastases was suggested. This campaign would focus on educating patients; reducing the stigma and misinformation on brain metastases; empowering patients to ask health professionals questions and to request adequate screening and treatment. An example to follow could be the “Know your lemons” campaign for breast cancer awareness. The idea of paid campaigns on Google was also raised, to make sure evidence-based and relevant information appears when people use search terms such as “brain metastasis” or “brain metastases” online.
After thorough discussions, the following next steps were proposed by Symposium participants:
1. Formation of an international Brain Metastases Collaborative: establish a global collaborative network to work together and implement the Symposium discussed ideas. This network could meet twice a year (virtually), with an in-person meeting depending on the availability and preferences of the participants. These meetings would allow the collaborative network to track progress, discuss further ideas, and celebrate achievements.
2. Initiate mapping exercise: start the mapping exercise and repository creation promptly to gather and share information on brain metastases resources. This was judged to be an attainable goal in the short term.
The first International Patient Advocacy Symposium on Brain Metastases served as an initial platform to collectively share ideas and agree on action points to address the challenges of brain metastases. It also served to create connections between people and organisations who contributed their energy and knowledge generously to make this first gathering a success. Symposium participants expressed commitment and enthusiasm to work together to make a real impact and improve the lives of patients and caregivers affected by brain metastases. The proposed international collaborative network aims to build momentum and ensure continued progress for patients with brain metastases and their communities.
The IBTA and ABTA thank all the Symposium attendees for their much-valued participation in this meeting on brain metastases*.
• Amanda Sisco, Melanoma Research Foundation, US
• Amy Kampschroeder, GO2 for Lung Cancer, US
• Amy Chastain Moore, LUNGevity Foundation, US
• Anna Uzlova, Inspiration Family, Ukraine
• Berit (Birdie) Eberhardt, International Kidney Cancer Coalition, Germany
• Batchimeg Batchuluun, Nomax Publishing and former caregiver, Mongolia
• Carol Kruchko, Central Brain Tumor Registry of the US
• Chas Haynes, Society for Neuro-Oncology, US
• Debra Montague, Alk Positive, UK
• Ellen Verschuur-van der Voort, Europa Donna, The Netherlands
• Emilie Prazakova, Roche, Switzerland
• Erik Ramos, Northwest Biotherapeutics, US
• Gordon Oliver, International Brain Tumour Alliance, UK
• Inna Kucherenko, International Brain Tumour Alliance, UK and Ukraine
• Inessa Matiuskenko, Inspiration Family, Ukraine
3. Recruitment of additional stakeholders: reach out to other organisations that were invited but couldn’t attend the Symposium meeting to include them in the collaborative efforts. This should be done, in any event, for any action steps taken forward from the Symposium.
4. Continued communication: set up a Facebook group or website (that could also serve as a landing page for the social media campaign) to facilitate ongoing communication among participants.
5. Resources page in the Symposium report: include a resources page with website addresses for various projects and initiatives related to brain metastases at the back of this Symposium meeting report.
• Jaimee Becker-Halprin, Novocure, US
• Jean Arzbaecher, University of Illinois, US, and International Brain Tumour Alliance, US
• Kathy Oliver, International Brain Tumour Alliance, UK
• Kathy Redmond, Redmond Consulting, Switzerland
• Lukas Artner, Bristol Myers Squibb, Austria
• Matthias Preusser, Medical University of Vienna, Austria
• Lena Geltenbort-Rost, Seagen, Switzerland
• Manmeet Ahluwalia, Miami Cancer Institute, US
• Marjo Forsblom, Lung Cancer Europe, Finland
• Mary Ellen Maher, Northwestern Medical Group, US, and International Brain Tumour Alliance, US
• Mary Lovely, International Brain Tumour Alliance, US
• Medha Deoras Sutliff, Metastatic Breast Cancer Alliance, US
• Nicole Willmarth, American Brain Tumor Association, US
• Ralph DeVitto, American Brain Tumor Association, US
• Richard Price, European Cancer Organisation, Belgium
• Roland Hackl, Bristol Myers Squibb, Austria
*Country denoted for Symposium participants is the country of origin of the participant
Report of the International Patient Advocacy Symposium on Brain Metastases, Vienna, Austria – 24th to 26th June 2023
Report
– 24th to 26th June 2023
1. WEBSITES
■ International Brain Tumour Alliance (IBTA): https://theibta.org
■ American Brain Tumor Association (ABTA): https://www.abta.org
■ Europa Donna: https://www.europadonna.org
■ Europa Donna resources on Metastatic Breast Cancer: https://www.europadonna.org/metastatic/
■ Europe’s Beating Cancer Plan Consultation: https://eurohealthobservatory.who.int/publications/m/europe-sfactual report from the targeted stakeholder consultation: beating-cancer-plan-consultation-factual-report-from-the-targetedstakeholder-consultation
■ European Organisation for Research and Treatment of Cancer (EORTC): https://www.eortc.org
■ EORTC clinical trial database: https://www.eortc.org/clinical-trials-database/
■ EORTC Brain metastases research and emerging therapy conference - https://www.brain-mets.com 4 to 6 October 2023 in Paris:
■ Resource hub for breast cancer patients with brain metastasis: https://mbcbrainmets.org
■ Metastatic Breast Cancer Alliance: https://www.mbcalliance.org
■ European Association of Neuro-Oncology: https://www.eano.eu
■ The Dandelion Toolkit to explain cancer stages: https://dandeliontoolkit.com
■ Living Beyond Breast Cancer https://www.lbbc.org (breast cancer resources, real stories, and support):
■ The Marina Kaplan Project https://www.mbcalliance.org/projects/breast-cancer-brain(patient-led initiative that aims to accelerate urgently-needed research metastasis-initiative/ on breast cancer brain metastasis through increased funding and influencing key stakeholders):
■ Paediatric Investigation Plan (PIP): https://toolbox.eupati.eu/resources/paediatric-medicine-paediatricinvestigation-plan/ and https://www.ema.europa.eu/en/glossary/paediatricinvestigation-plan
■ Lung Cancer Europe (LUCE): https://www.lungcancereurope.eu
■ LUNGevity: https://www.lungevity.org
■ Melanoma Research Foundation (MRF): https://melanoma.org/research-science/
■ MRF clinical trials support: https://melanoma.org/patients-caregivers/clinical-trials/
■ MRF resources: https://melanoma.org/patients-caregivers/cutaneous-melanoma/ resources-cutaneous/
■ International Kidney Cancer Coalition: https://ikcc.org
■ Metastatic Brain Tumor Collaborative: https://www.abta.org/metastatic-brain-tumor-collaborative/
■ ALK Positive UK: https://www.alkpositive.org.uk
■ The blood brain barrier: https://www.youtube.com/watch?v=gCXso3bcEXI
■ Canadian Breast Cancer Network (CBCN): https://www.cbcn.ca/en/
■ Living Beyond Breast Cancer: https://www.lbbc.org/
■ Melanoma Patient Network Europe (MPNE): http://www.melanomapatientnetworkeu.org/
■ Global Lung Cancer Coalition (GLCC): https://www.lungcancercoalition.org/
■ Melanoma Research Alliance: https://www.curemelanoma.org/
■ AIM at Melanoma: https://www.aimatmelanoma.org/
■ Brustkrebs Deutschland: https://brustkrebsdeutschland.de/
■ Digestive Cancers Europe (DiCE): https://digestivecancers.eu/
■ Fight Colorectal Cancer: https://fightcolorectalcancer.org/
■ ABC Global Alliance: https://www.abcglobalalliance.org/
■ Borstkankervereniging Nederland: https://www.borstkanker.nl/
■ Mamma Mia Breast Cancer Magazine: https://mammamia-online.de/
■ Mon Reseau Cancer du Sein: https://www.monreseau-cancerdusein.com/
■ Cancer de Mama Metastático: https://www.cancermamametastasico.es/
■ Global Colon Cancer Association: https://www.globalcca.org/
■ GO2 for Lung Cancer: https://go2.org/
2. PUBLICATIONS
■ Melanoma central nervous system metastases: current approaches, challenges, and opportunities12 Sept 2016 - Pigment Cell and Melanoma Research: https://onlinelibrary.wiley.com/doi/full/10.1111/pcmr.12538
■ Melanoma central nervous system metastases: An update to approaches, challenges, and opportunitiesReview 1 Aug 2022 – Pigment Cell and Melanoma Research: https://onlinelibrary.wiley.com/doi/10.1111/pcmr.13059?af=R
■ Treatment options in brain metastases in kidney cancer (video): https://ikcc.org/infohubpost/treatment-options-in-brain-metastases-in-kidney-cancer/
■ Interdisciplinary consensus of the management of brain metastases in patients with renal cell carcinoma16 June 2022 – Cancer Journal for Clinicians: https://acsjournals.onlinelibrary.wiley.com/doi/10.3322/caac.21729
■ CBTRUS publications: https://cbtrus.org/reports/
■ CBTRUS fact sheets 2022: https://cbtrus.org/cbtrus-fact-sheet-2022/
■ ESMO Clinical Practice Guidelines: Supportive and Palliative Care: https://www.esmo.org/guidelines/guidelines-by-topic/supportive-and-palliative-care
■ ESMO Guide for Patients with Advanced Cancer: Getting the Most Out of Your Oncologist (in various languages): https://www.esmo.org/for-patients/getting-the-most-out-of-your-oncologist
■ Europe’s Beating Cancer Plan: https://health.ec.europa.eu/system/files/2022-02/eu_cancer-plan_en_0.pdf
■ ABTA’s cross-sectional survey of patients, caregivers and physicians on diagnosis and treatment of brain metastases: https://doi.org/10.1093/nop/npab042
■ The Brain Tumour Patients Charter of Rights, Kathy Oliver, Gordon Oliver, Barrie Littlefield, Kristina Knight, David Arons, Danielle Leach (drafting/editorial committee), https://theibta.org/wp-content/uploads/2022/01/BTPatientsCharterofRights-Updated-180122.pdf
3. CAMPAIGNS and VIDEOS
■ Know your lemons: https://www.knowyourlemons.org
■ “The Cancer Currency” campaign (Europa Donna): https://www.thecancercurrency.com
■ Lung cancer “Get checked campaign” (European Lung Foundation): https://www.getchecked.eu
■ Six warning signs of brain tumors (Cleveland Clinic): https://www.youtube.com/watch?v=2OfLiWLjaEY
■ Better safe that tumour (The Brain Tumour Charity): https://www.youtube.com/shorts/SabBOkL6rNY
■ Brain Mets and Lung Cancer: 5 Key Facts (American Lung Association): https://www.youtube.com/watch?v=OlqSpJPXaXk
■ Lung Cancer and Brain Mets: Jodi’s Story (American Lung Association): https://www.youtube.com/watch?v=5_mSvoIRisY
■ Choosing Treatment for Lung Cancer Brain Mets (American Lung Association): https://www.youtube.com/watch?v=DeXFxK2md5k
■ “Clear on cancer” (NHS campaigns): https://www.youtube.com/watch?v=0sH50SapSoU https://www.cancerresearchuk.org/health-professional/awareness-and-prevention/be-clear-on-cancer REFERENCES
1 Elshad Hasanov MD, PhD, Debra Nana Yeboa MD, Mathew D. Tucker MD et al, An interdisciplinary consensus on the management of brain metastases in patients with renal cell carcinoma June 2022 https://doi.org/10.3322/caac.21729
2 Albert E Kim et al, Cross-sectional survey of patients, caregivers, and physicians on diagnosis and treatment of brain metastases, NeuroOncology Practice, Volume 8, Issue 6, December 2021, Pages 662–673, https://doi.org/10.1093/nop/npab042
3 Le Rhun E, Guckenberger M, Smits et al. on behalf of the EANO Executive Board and ESMO Guidelines Committee, EANO–ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up of patients with brain metastasis from solid tumours†, Annals of Oncology (2021), doi:
4 Bartsch, R., Berghoff, A.S., Furtner, J. et al. Trastuzumab deruxtecan in HER2-positive breast cancer with brain metastases: a single-arm, phase 2 trial. Nat Med 28, 1840–1847 (2022). https://doi.org/10.1038/s41591-022-01935-8 https://www.nature.com/articles/s41591-022-01935-8 https://www.nature.com/articles/d41586-022-02131-x
5 See above
Mark Lawler, Kathy Oliver, Stefan Gijssels, et al. Journal of Cancer Policy, Volume 28, 2021, 100282, ISSN 2213-5383, https://doi.org/10.1016/j. jcpo.2021.100282. The European Code of Cancer Practice: https://www.europeancancer.org/resources/198:european-code-of-cancer-practicepublished-in-journal-of-cancer-policy.html
6 Kathy Oliver, Gordon Oliver, Barrie Littlefield, Kristina Knight, David Arons, Danielle Leach (drafting/editorial committee). The Brain Tumour Patients Charter of Rights: https://theibta.org/wp-content/uploads/2022/01/BTPatientsCharterofRights-Updated-180122.pdf
7 The ECO survey report on NLCSC with brain metastases can be downloaded from here: https://www.europeancancer.org/ events/125:community-365-roundtable-meeting-on-metastatic-cancer
INTERNATIONAL
The International Brain Tumour Alliance and the American Brain Tumor Association thank all of the Symposium participants for joining us in Vienna.