BALANCE: embracing diversity in prostate cancer
Bem-vindo ao Estudo BALANCE
Obrigado por visitar a página do Estudo BALANCE.
Este estudo tem como objetivo compreender melhor como o câncer de próstata afeta homens negros de ascendência africana e caribenha, bem como homens de origens étnicas mistas. Historicamente, esses grupos têm sido sub-representados em pesquisas, apesar de enfrentarem riscos mais elevados e formas mais agressivas da doença.
Nosso objetivo é garantir que suas vozes sejam ouvidas, suas experiências sejam reconhecidas e suas necessidades sejam refletidas nos serviços de saúde, políticas e pesquisas.
Nesta página, você encontrará informações detalhadas sobre o estudo, seu objetivo, quem pode participar e como os resultados ajudarão a melhorar o atendimento a essas comunidades. Você também conhecerá a equipe por trás do projeto, nossos parceiros internacionais e como participar.
Quer você esteja participando do estudo, apoiando alguém que está participando ou apenas queira saber mais, estamos felizes por você estar aqui.
Por que esse estudo é necessário?
Homens negros têm duas vezes mais chances de desenvolver câncer de próstata em comparação com homens brancos. Eles também são mais propensos a serem diagnosticados em uma idade mais jovem e com formas mais agressivas da doença.
Esses grupos são frequentemente sub-representados nas pesquisas sobre câncer de próstata, então este estudo tem como objetivo garantir que suas experiências sejam melhor compreendidas e refletidas nos cuidados de saúde e nas políticas públicas.
Para homens de ascendência étnica mista, o estudo também quer explorar como sua herança mista pode afetar o risco e os resultados do câncer de próstata — uma área que ainda não foi suficientemente estudada.
Quais são os objetivos deste estudo?
O Estudo BALANCE visa dar voz aos grupos sub-representados e criar uma abordagem mais justa e inclusiva para a pesquisa e o tratamento do câncer de próstata.
- Queremos identificar deficiências no acesso à informação e aos cuidados.
- Queremos entender os desafios únicos que esses homens enfrentam, observando como as questões sociais, econômicas e de saúde afetam o diagnóstico, o tratamento e a qualidade de vida em geral.
- Queremos fazer mudanças reais usando as descobertas para melhorar os serviços de saúde e o acesso à informação, mudar políticas e melhorar as diretrizes clínicas para melhor atender a esses homens.
Participation in the study
Who can take part in this study?
- You can take part if you are 18 years old or older.
- You have been diagnosed with prostate cancer.
- This is an online questionnaire, so you’ll need a phone, tablet, or computer with internet access.
- Before you join, you’ll be asked to give informed consent.
What does “informed consent” mean?
Informed consent means you understand what the study is about and what you’re agreeing to do.
You likely heard about this study through one of our partners, which means you’re likely eligible to take part. Or, you might be a partner, family member, or friend of someone with prostate cancer — you’re very welcome to complete the questionnaire together with them or on their behalf.
Como essas populações se beneficiarão deste estudo?
O Estudo BALANCE pode ajudar homens negros e homens de ascendência étnica mista de várias maneiras importantes:
Ao incluir suas experiências, o estudo garante que esses homens sejam vistos e ouvidos. Ele ajuda a mostrar suas necessidades e desafios, tornando suas vozes mais fortes nas discussões sobre saúde e pesquisa.
O estudo pode apontar onde há deficiências na área da saúde e pressionar por um melhor acesso a exames, tratamentos e apoio. Isso ajuda a garantir que esses homens recebam os cuidados de que precisam, quando precisam.
Ao compreender como o câncer de próstata afeta esses homens de maneira diferente, os profissionais de saúde podem criar planos de tratamento mais personalizados. Isso significa que homens negros e homens de ascendência étnica mista têm mais chances de receber os cuidados adequados às suas necessidades específicas.
Como o estudo destaca os riscos mais elevados para homens negros e homens de ascendência étnica mista, ele ajuda a aumentar a conscientização tanto na comunidade médica quanto nessas próprias comunidades. Mais conhecimento pode levar a uma detecção mais precoce, melhores resultados e decisões de saúde mais bem informadas.
As conclusões deste estudo podem ajudar a mudar as políticas de saúde e as diretrizes clínicas para atender às necessidades específicas dos homens negros e dos homens de ascendência étnica mista. Isso poderia levar a programas de saúde mais solidários e a pesquisas melhores focadas em melhorar seus resultados.
O estudo pode ajudar a criar conexões mais fortes entre esses homens, grupos de pacientes e profissionais de saúde. Ele pode ajudar a criar consciência e construir um senso de comunidade. Pode ajudar a empoderá-los para que assumam o controle de sua saúde e se expressem.
No geral, o estudo ajuda a homens de ascendência africana/africana-caribenha e homens de ascendência étnica mista , fornecendo as ferramentas, informações e apoio de que precisam para gerir melhor o câncer de próstata e melhorar os seus cuidados de saúde.
To participate, simply click the link or scan the QR code provided.
If you come across any wording or phrases in the questionnaire that are unclear, you can use the following link for further explanations and helpful definitions. This resource is designed to support your understanding and make the survey as straightforward as possible.
Do you need assistance?
If you need any assistance completing the questionnaire, please don’t hesitate to reach out. Our partners are here to support you and can be contacted at any time. You’ll find their contact details listed below.
Contact
If you have any questions about the study, feel free to contact us at info@patientinformation.org.
If you need help filling out the questionnaire, please contact your local charity.
About our partners
Cancer Black Care (CBC) is a non-profit organisation that provides support for all those living with and affected by cancer with an emphasis on black people and people of colour.
At Cancer Black Care, we believe that everyone, regardless of their background, deserves access to the best possible care and support when facing the challenges of cancer. Our emphasis (not exclusively) is to provide dedicated assistance to Black people and ethnic minority communities as they navigate the journey through cancer diagnosis, treatment, and survivorship.
"Cancer Black Care is invaluable for Black people and people of colour affected by cancer, as it fosters cultural understanding, provides tailored services and creates a safe space where individuals can connect and identify with others who share similar backgrounds and experiences.' - Sophie Sebaduka, CBC
Contact person: Paul Campbell
Tel: +44 (0)7340 471970
Email: info@cancerblackcare.org.uk
Website: https://www.cancerblackcare.org.uk/
Cancer Don't Let It Win (CDLIW) is a non-profit support group raising awareness of prostate cancer within Black communities.
‘We are sanctuary for men diagnosed with or recovering from prostate cancer. We understand the challenges and complexities that come with this journey, and our aim is to provide a safe and supportive environment where individuals can share their experiences, find solace, and gain valuable insights.’ ― Jeff Thompson, CDLIW
Contact person: Jeff Thompson
Tel: +44 (0)333 33 55 916
Email: cancerdontletitwin@gmail.com
Website: https://www.cancerdontletitwincic.com/
CanSurvive UK provides culturally sensitive support and information primarily however not exclusively for African and Caribbean people living with and beyond cancer, their families and carers. Their mission is to provide culturally sensitive support services and information for - though not limited to - African, Caribbean and other diverse communities affected by cancer, empowering them with confidence, resilience and strength to navigate its challenges.
Contact person: Marcella Turner
Tel: +44 (0)161 232 1286
Email: marcella@can-survive.org.uk
Website: https://can-survive.org.uk/
Cancer UK - Salone is a charity based in the UK that helps people with cancer who are struggling, both in the UK and in Sierra Leone. They focus on supporting patients from underserved and ethnic minority communities by offering care that respects each person’s dignity and needs.
Their services include emotional support, counselling, food for those in need, help for carers, and community outreach to make sure people can get to appointments and pick up medicine. In Sierra Leone, they run the country’s first big campaign to raise awareness about prostate cancer, encouraging men to get tested early and educating communities. In the UK, they work with other groups to support Black men, who are more at risk of prostate cancer, through local events and campaigns. The charity works closely with health workers and community partners and makes sure its volunteers are trained and safe to work with vulnerable people. Their goal is to make cancer care fairer, more accessible, and better for everyone.
Contact person: Tina Davies
Tel: +44 (0)7949401836 (UK) / +232 80623623
Email: tdavies@canceruksalone.com
Website: info@canceruksalne.org
"When it comes to prostate cancer, silence kills — but support heals. For Black African men, early detection, equal access and community-based care are not just needs, they are rights. At Cancer UK-Salone, we stand firmly in the gap—ensuring that no brother walks this journey alone." - Cancer UK - Salone
The Errol McKellar Foundation is an exciting and unique charitable project founded by 60 year old football coach, former garage owner and prostate cancer survivor, Errol McKellar. It focuses on giving presentations and talks around the UK to raise the awareness of important men’s health issues, especially prostate cancer. Errol and others who have direct personal experience will explain the symptoms and outcomes relating to it and encourage men to have regular PSA tests.
Contact person: Errol McKellar
Tel: +44 (0)7850 317995
Email: info@errolmckellar.com
Website: https://www.theerrolmckellarfoundation.com/
Friends of Caswell Thompson (FOCT) is an organisation set up for, and dedicated to, raising awareness about prostate cancer in the BAME communities in Bristol and surrounding towns and villages through a range of activities, with a particular focus on reaching black men, who have an incident rate of 1 in 4. The general population is 1 in 8.
The company is named after our late and dear friend Caswell Thompson, who, sadly, succumbed to the disease at the age of sixty-one in 2016. It was his dying wish for us to continue raising awareness in the community; that promise was made. And by organising and running regular prostate cancer awareness open events for the whole community, in collaboration with Health Professionals and specialist clinicians, Friends of Caswell Thompson honours that commitment. ― Errol Campbell, FOCT
Contact person: Errol Campbell
Tel: no phone number listed
Email: admin@foct.uk
Website: https://www.foct.uk/
Orchid is a UK-based charity dedicated to raising awareness, advancing research, and helping to providing support for those affected by prostate, testicular, and penile cancer, with a strong focus on reaching diverse and underserved communities.
‘The BALANCE Study is a vital tool for capturing the real experiences and outcomes of men, helping to ensure that their voices — particularly those from underrepresented communities — shape future care, research, and policy.’ — Rob Cornes, ORCHID
Contact person: Rob Cornes
Tel: +44 (0)20 3745 7310
Email: info@orchid-cancer.org.uk
Website: https://orchid-cancer.org.uk/
Prostate Cancer Research UK (PCR) is a UK-based charity committed to driving breakthroughs in prostate cancer treatment, especially for advanced stages. They invest in innovative science, support clinical trials, tackle health disparities, and ensure patients have a meaningful voice in shaping research and resources.
‘At Prostate Cancer Research (PCR), we are advancing groundbreaking research and treatments to create a future where prostate cancer no longer threatens lives. Our focus is on delivering innovative solutions and improving quality of life for patients, families, and communities affected by prostate cancer.’ ― Oliver Kemp, PCR
Contact person: Jayne Spink
Tel: +44 (0)800 082 1616
Email: info@pcr.org.uk
Website: https://www.prostate-cancer-research.org.uk/
Prostate Cancer UK is the largest men’s health charity in the UK, striving for a world where no man dies of prostate cancer. 1 in 8 men will get prostate cancer, and if you’re Black, your risk is double. It’s the most common cancer in men, and now the most common cancer in England. We’re here to give men the power to navigate it.
We’re investing millions in prostate cancer research to revolutionise testing, treatment and care. We’re campaigning to raise awareness, right health inequalities and get more men a lifesaving earlier diagnosis. We’re providing expert advice and support to men affected by prostate cancer and those who love them. And in all we do, we work to make sure no man is left behind. The earlier you find prostate cancer, the easier it is to treat, and an earlier diagnosis could save your life. Find out more: prostatecanceruk.org
‘Black men have twice the risk of being diagnosed and dying from prostate cancer, yet we still know too little about how prostate cancer affects different aspects of their lives. The BALANCE study will help close critical evidence gaps an ensure the needs of Black men are truly heard. Increasing the representation of Black men in PROMs data is an important step to get us closer to health equity in prostate cancer.’ ― Natalia Norori, Prostate Cancer UK
Contact person: Natalia Norori
Email: Natalia.Norori@prostatecanceruk.org
Website: https://prostatecanceruk.org/
The Rose Thompson Foundation is dedicated to protecting and improving the health of people, especially those from the global majority and low-income communities affected by cancer. We provide, facilitate, and support the delivery of care that respects different cultures and meets individual needs:
- Culturally appropriate and holistic cancer care
- Support group networks for patients and carers
- Community engagement and involvement to improve participation in clinical research
We aim to make cancer care more inclusive, supportive, and effective for those who need it most.
‘In February 2013, our founder, the late Dr. Rose Thompson, authored and launched a groundbreaking report in the UK House of Commons. It was titled “Hear Me Now! The Uncomfortable Reality of Prostate Cancer in Black African-Caribbean Men. This report sparked a national campaign, igniting a national conversation that continues to resonate today. The Rose Thompson Foundation is driven by such a call to action. Conditions like prostate cancer, breast cancer, and multiple myeloma are significantly more common in people of Black African and Caribbean descent, with risks often twice as high as those in the white population. We are therefore dedicated to protecting and improving the health of people, especially those from global majority and low-income communities affected by cancer. We aim to make cancer research, treatment and care more inclusive, supportive, and effective for those who need it most.’ — Lindsay Thompson, The Rose Thompson Foundation
Contact person: Lindsay Thompson
Tel: +44 (0)742830786
Website: https://www.rosetf.org.uk/
