BALANCE: embracing diversity in prostate cancer
Welkom bij het BALANCE-onderzoek
Hartelijk dank voor uw bezoek aan onze pagina.
Met het BALANCE-onderzoek willen we beter begrijpen wat de impact van prostaatkanker is op mannen van Afrikaanse en Caribische afkomst, en mannen met een gemengde of andere etnische achtergrond.
Deze groepen zijn historisch ondervertegenwoordigd in onderzoek, terwijl zij juist een verhoogd risico hebben op prostaatkanker en vaker te maken krijgen met agressievere vormen van de ziekte.
Op deze pagina vindt u gedetailleerde informatie over het onderzoek, het doel ervan, wie eraan kan deelnemen en hoe de resultaten zullen bijdragen aan de verbetering van de zorg voor deze gemeenschappen. U komt ook meer te weten over het team achter het project en hoe u kunt deelnemen.
Of u nu deelneemt aan het onderzoek, iemand ondersteunt die dat doet, of gewoon meer wilt weten, we zijn blij dat u hier bent.
Waarom is dit onderzoek nodig?
Mannen van Afrikaanse en Caribische afkomst, evenals mannen met een gemengde etnische achtergrond, hebben twee keer zoveel kans op prostaatkanker als blanke mannen. Ze krijgen ook vaker op jongere leeftijd de diagnose en hebben vaker te maken met agressievere vormen van de ziekte.
Deze mannen zijn vaak ondervertegenwoordigd in onderzoek naar prostaatkanker. Het BALANCE onderzoek heeft dan ook tot doel ervoor te zorgen dat hun ervaringen beter worden begrepen en dat hun behoeften worden weerspiegeld in de gezondheidszorg en het beleid hieromtrent.
Voor mannen met een gemengde etnische afkomst willen wij met het BALANCE onderzoek ook nagaan hoe hun gemengde afkomst van invloed kan zijn op hun risico op prostaatkanker en de uitkomsten daarvan – een gebied waar tot nu toe nog weinig onderzoek naar is gedaan.
Wat zijn de doelstellingen van deze studie?
Het BALANCE-onderzoek heeft als doel om groepen die vaak minder gehoord worden, een stem te geven. We willen dat het onderzoek en de zorg rond prostaatkanker eerlijker en inclusiever worden, zodat iedereen de juiste aandacht en ondersteuning krijgt.
- We willen tekortkomingen in de toegankelijkheid van informatie en zorg in kaart brengen.
- We willen inzicht krijgen in de unieke uitdagingen waarmee deze mannen worden geconfronteerd door te kijken naar hoe sociale, economische en gezondheidszorgkwesties van invloed zijn op de diagnose, behandeling en algehele kwaliteit van leven.
We willen echte verandering teweegbrengen door de bevindingen te gebruiken om de gezondheidszorg en de toegang tot informatie te verbeteren, het beleid te veranderen en de klinische richtlijnen te verbeteren om deze mannen beter van dienst te kunnen zijn.
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.
Hoe zullen deze bevolkingsgroepen van dit onderzoek profiteren?
Het BALANCE onderzoek kan mannen van Afrikaanse en Caribische afkomst en mannen van gemengde etnische afkomst op verschillende belangrijke manieren helpen:
Door hun ervaringen mee te nemen, zorgt het onderzoek ervoor dat deze mannen gezien en gehoord worden. Het helpt hun behoeften en uitdagingen in kaart te brengen, waardoor hun stem sterker wordt in discussies over gezondheidszorg en onderzoek naar prostaatkanker.
Het onderzoek kan aangeven waar de gezondheidszorg tekortschiet en aandringen op betere toegang tot screenings (preventief onderzoek), behandelingen en ondersteuning. Dit helpt ervoor te zorgen dat deze mannen de zorg krijgen die ze nodig hebben wanneer ze die nodig hebben.
Door te begrijpen hoe prostaatkanker deze mannen op verschillende manieren treft, kunnen zorgverleners meer gepersonaliseerde behandelplannen opstellen. Dit betekent dat mannen van Afrikaanse en Caribische afkomst en mannen van gemengde etnische afkomst meer kans hebben om de zorg te krijgen die is afgestemd op hun unieke behoeften.
Aangezien het onderzoek de hogere risico's voor mannen van Afrikaanse en Caribische afkomst en mannen van gemengde etnische afkomst benadrukt, helpt het om het bewustzijn te vergroten, zowel in de medische wereld als binnen deze gemeenschappen zelf. Meer kennis kan helpen om prostaatkanker eerder op te sporen, de behandeling te verbeteren en mensen te helpen beter geïnformeerde keuzes te maken over hun gezondheid.
De bevindingen van dit onderzoek kunnen helpen om het gezondheidsbeleid en de klinische richtlijnen aan te passen aan de specifieke behoeften van mannen van Afrikaanse en Caribische afkomst en mannen van gemengde etnische afkomst. Dit kan bijdragen aan meer ondersteunende zorgprogramma’s en beter onderzoek dat zich richt op het verbeteren van hun gezondheid en behandelingsresultaten.
Het onderzoek kan helpen om sterkere banden te smeden tussen deze mannen, patiëntengroepen en zorgverleners. Het kan bewustwording vergroten, een gevoel van gemeenschap versterken en mannen ondersteunen om meer controle over hun gezondheid te krijgen en voor zichzelf op te komen. Over het algemeen helpt het onderzoek mannen van Afrikaanse/Afrikaans-Caribische afkomst en mannen van gemengde etnische afkomst door hen de informatie, hulpmiddelen en begeleiding te bieden die ze nodig hebben om prostaatkanker beter te begrijpen en hun gezondheidszorg te verbeteren.
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/
