Conoscere il Tumore della Prostata Prof. Maurizio Buscarini Direttore UOC e Scuola di Specializzazione in Urologia

Obiettivi Pubblicizzare la nostra campagna di informazione Problemi che si incontrano a far conoscere il problema Che cosa abbiamo fatto Che cosa vogliamo fare

Obiettivi 2 Formare la più grande organizzazione di prevenzione e cura del Tumore della prostata La nostra speranza: Un mondo in cui il tumore della prostata non sia più una causa di sofferenza e morte La nostra missione: Combattere il tumore della prostata in ogni fronte: con la ricerca, supporto, informazione e campagne di prevenzione The UK’s leading charity: Office bases in London and Glasgow c. 65 staff c. 60 volunteers Income of £6m. Growing org. 36% increase in income on previous year. Relatively small compared to other cancer charities: Breast Cancer Care income of £15m; CRUK £142m. 3

Che cosa facciamo Supporto individuale per i malati Informazione Forum di discussione, consulenza gratuita medica e gruppi di supporto di pazienti e professionisti Informazione Finanziamenti alla Ricerca Formazione e lavoro con Personale Medico Fundraising Aumentare la conoscenza dell’impatto sociale della malattia A quick run through of the Charity’s offerings: Freephone Nurse Led Helpline – only prostate cancer Helpline like this in the country Information – wide range available online and publications – stall is here today with materials available to take away Peer support – volunteer led telephone based service facilitated through our Helpline - run for people affected by prostate cancer, by people affected by prostate cancer Fund research - £7m funded so far. Peer reviewed system open to all types of research Working with health professionals – Masterclass last year, event in Glasgow for nurses in May, events like this, newsletter and web page Campaigning – lobbying government; issue specific (eg Hormone Therapy); Voices involvement (eg events in Glasgow and Inverness to inform campaign development) Fundraising – the majority of our income is voluntary. We have a whole range of fundraising activities from community based events such as the Real Man Cup 5 a side and coffee mornings, Movember, through to corporate sponsors such as M&S and Snap On Tools. Awareness raising – going to focus on this today 4

Perchè sensibilizzare l’opinione pubblica? Questo è il tumore più frequente in Italia 32000 diagnosi l’anno 10000 morti l’anno Non sappiamo ancora come prevenire questo tumore Diagnosi più precoce = più scelte terapeutiche Solo il 56% degli uomini sanno che questo è il tumore più frequente Solo il 32% degli uomini sa che cos’è la prostata In Scotland, second most common cancer in men after lung, but difference is only 60 diagnoses and year previous was higher than lung. In Scotland men have a 1 in 13 lifetime risk of getting prostate cancer. It is estimated that in 2005 over 14,000 men were living with prostate cancer in Scotland. 2008 ICM poll 56% of men know prostate cancer is the most common cancer in men Only 32% correctly identified the function of the prostate gland Ethnibus market research showed that: 58% African Caribbean men knew prostate cancer most common cancer in men Only 15% knew AC men more likely to get prostate cancer than other men. 2007 ICM poll 13% of men aware of function of prostate gland 46% thought breast cancer is 3 x more common than prostate cancer 2003 ICM poll 89% didn’t know function 66% didn’t know where it is in the body 33% didn’t know only men have a prostate

La Charity per il Tumore della Prostata 5 Obiettivi a lungo termine di cui uno relativo all’aumento della consapevolezza sociale della malattia: Avere nel 2020 una conoscienza sociale del Tumore della Prostata pari o superiore a quella del Tumore al seno The reason we have pulled out African Caribbean community is the 3x elevated risk in that population There is a range of targets associated with these goals

Altri fatti importanti La ricerca ha mostrato che Pochissimi sanno dell’importanza di questo tumore La magnitudine del problema sorprende la maggior parte delle persone Erroneamente confinato a malattia dell’anziano (non mi riguarda) L’opinione pubblica ignora cosa sia la prostata Non si conoscono i sintomi di questo tumore rispetto ad altri tumori meno prevalenti ma più conosciuti Informare soprattutto i Medici di Base Qualitative research projects In 2008 commissioned two qualitative research projects to aid the development of our awareness raising strategy. The first was a series of six qualitative research groups amongst unengaged men and their partners in June 2008. The objectives were to gain an understanding of the audience, their relationship with health and their current awareness and knowledge of prostate cancer. understand which messages engaged our audience most effectively and to appreciate how to use the facts about prostate cancer to increase men’s receptivity to the issue. Six two hour groups were conducted, four amongst 50 to 65 year old men and two amongst women with partners of the same age. The groups were biased to lower socio economic groups and were spread amongst London, the Midlands and Scotland. One of the male groups was African Caribbean. Conclusion – men felt that is a problem with a silence around prostate cancer which needs addressing The second was a research study of GPs attitudes to awareness raising which involved 12 depth interviews in December 2008. Research on GP attitudes to raising awareness of prostate cancer and their view on what should be strategy. Depth interviews 12 GPs who represented a range of rural and urban, regional and attitudinal perspectives, ensuring that we also included those who represented an African Caribbean community. WHAT THE GPS THINK OUR COMMUNICATION STRATEGY SHOULD BE: The challenge Get men who have prostate symptoms to go their GP. Make them see that they have a problem that needs attention, don’t alarm them but don’t allow them to ignore it either, prompt them to get it checked out with their GP. The audience Primarily: C2DE men and African Caribbean men, 45-65. No serious health issues to date so rarely visit the surgery. Ignorant on the prostate and prostate cancer. Secondarily: their partners. 7

Che cosa vogliamo comunicare? Che cos’è e cosa fa la prostata Il tumore della prostata è il tumore piiù frequente nell’uomo Quali sono i Fattori di Rischio Sintomi e segni …e soprattutto incoraggiare gli uomini a parlarne con i propri medici di base e specialisti The Charity has set itself a range of targets associated with these goals which focus on Targets 75% of men & women will know that prostate cancer is the most common cancer in men 70% of men & women over the age of 45 will know the risk factors for prostate cancer 70% of men & women over the age of 45 will know key signs & symptoms of prostate cancer 90% of men with a concern about prostate cancer symptoms will act on that knowledge and will visit their GP. By 2020, society will understand the key facts about prostate cancer and will act on that knowledge By 2020, African Caribbean men and women will know more about prostate cancer and will act on that knowledge

Punti Chiave Dov’è la Prostata? The organisers asked for a quick knowledge update so will have to present this info as being about placing the presentation in context. More detailed info available via Charity’s stand. You could always ask the audience if they want one and skip over it if they know exactly what’s what.

La Prostata: Punti Chiave Che cosa fa? È una ghiandola sessuale secondaria fondamentale per la riproduzione Di che cosa di ammala? Iperplasia Prostatica Benigna (IPB) Prostatite (infezione e infiammazione) Cancro

Fattori di Rischio Quali sono i fattori di rischio? Sesso Maschile (!) età: 90% over 60 Familiarità: 2.5 volte più frequente se è affetto il genitore o un fratello Alimentazione: Grassi saturi, latticini e carni rosse Age: in Scotland 89% of prostate cancer cases are diagnosed in men over 60.9 • Ethnicity: African Caribbean men are three times more likely to develop prostate cancer than white men. • Family: you are 2.5 times more likely to develop prostate cancer if your father or brother has had it. • Diet: if you have a diet rich in fat, dairy products and red meat, this may increase your risk of developing prostate cancer (and other health conditions). Important to highlight that prostate cancer may cause similar symptoms to non-cancerous prostate problems.

Sintomi Spesso assenti A volte I seguenti possono segnalare un problema Basso flusso urinario Maggiore frequenza di urinare anche la notte Sensazione di incompleto svuotamento Difficoltà ad iniziare la minzione Meno frequenti Dolore nell’urinare Dolore osseo

Quali sono gli ostacoli alla diagnosi precoce Controversie sui costi dello screening Complessità della malattia I sintomi sono variabili o a volte assenti Non abbiamo un test perfetto per scoprire il tumore ma dobbiamo utilizzare una combinazione di metodiche Rischi connessi alla diagnosi stessa Raising awareness of prostate cancer is complex and controversial with disagreement over what should be done Within prostate cancer field is huge spectrum of views on whether awareness raising should be carried out. Some of medical community don’t think its wise, support groups and men with prostate cancer want us to be doing far more. Have to respond to those we represent and evidence based so take middle ground. have many internal discussions about this and Charity is working on awareness strategy Understanding of relationship between awareness raising and diagnosis of the disease is limited. TPCC wants to ensure people at risk of aggressive prostate cancer are diagnosed early – strategy And that anyone with symptoms goes to GP quickly. Unfortunately with many cases of aggressive prostate cancer – no symptoms However, by raising awareness could lead to increasing diagnoses of men who have slow growing form of cancer and in whom it would not have caused any problems in their lifetime. They may have treatments which have side effects that impact significantly on quality of life e.g. incontinence, impact on sexual function PSA test – can’t tell all men to have – pro’s and cons – advocate informed choice

Quali sono gli ostacoli alla diagnosi precoce. Manca un messaggio chiaro di prevenzione, diagnosi e cura no clear prevention message La percezione degli uomini over 50 del loro stato di salute è spesso imprecisa o negletta Molti sono vittime di comportamenti stereotipati o condizionati e alcune campagne di informazione sono state controproducenti Alcuni medici di base non sono favorevoli allo screening e diagnosi precoce Without clarity on testing, symptoms (many men don’t have them), call to action awareness messages become very complex when need to be simple. And cannot be specific about what we want men to do once they are aware. This forces our work to be general and less focussed. Agreed key messages on symptoms from DH has helped but call to action still difficult Men’s resistance health based messages – Our own research has reinforced previous evidence which suggests that 50 plus men are often unengaged with their health and reluctant to discuss personal issues, this is particularly notable in lower socio economic groups and these men are also most likely to be unaware of the risks of prostate cancer. They can also be hard to reach in media terms and this is a major challenge. Much of the language around men’s health and PCa trades in stereotypes and cliches (eg Real Man Campaign; use of pants on our posters) – this can divide an audience and no clear evidence yet on what works for who GPs disagree on benefits of awareness raising of prostate cancer – some GPs unsupportive of testing in men without symptoms. Concern about raising awareness in worried well

Come la nostra Charity può aiutare Messaggi diretti a: Uomini in categorie a rischio aumentato L’opinone Pubblica Meidici Governo Partner dell’Industria Mezzi per informare Lavorare con i media e le Pubbliche relazioni Uscire dagli ospedali e informare nel sociale Social Media Sensibilizzazione classe politica Fundraising Services: Nurse & Volunteer outreach, Media and Public relations Activities: Awareness Month This has been directly developed from the Scotland Volunteer Programme and is a new way for volunteers to be involved across the UK Nurses are available to give talks in various settings – Medical presentation 15

Attività della Charity Mese di Informazione e Prevenzione del Tumore della Prostata) Volontariato Fundraising Web site e pubblicazioni Media and PR Linee guida Focussed in on PCAM as mass campaign And on community outreach via the volunteer campaign

Mese della Prevenzione del Tumore della Prostata

Mese della Prevenzione del Tumore della Prostata Stabilire un tema facile da ricordare (uno slogan) Far parlare la gente del prblema Campagna di comunicazione multimediale (poster, social media Eventi, fundraising etc utilizzando materiale fornito dalla Charity Nuova brochure stampata ed elettornica Coinvolgere i nostri partner dell’industria e del sociale 35,000 men diagnosed a year – came out of focus groups

Programma di Volontariato Modello inglese 50 volontari Tutti affetti da Tumore della Prostata Scelti fra chi è più attivo nei forum e disponibili in stands in ospedali e centri commerciali Seminari e presentazioni nelle comunità locali utilizzando materiale fornito dalla Charity Valutazione critica con feedback dai partecipanti e.g. workplaces, Rotary Groups, community health events

Campagna “Più Anziani e Più Saggi” Focus al 2020 Istruire e supportare alcuni volontari a diventare nostri rappresentanti nelle rispettive comunità Contribuiscono ad aumentare la consapevolezza della malattia capillarmente e “dalla base” Progetti pilota per studiare come meglio coinvolgere i volontari nella campagna di informazione e foundraising In 2007 The Charity launched a volunteer programme to train and support men to become community champions to raise awareness within their own community. Funded by the City Bridge Trust, the project initially aimed to train community champions from various black and minority ethnic (BME) groups within six London boroughs. Following findings from the first phase of the project, work in 2009 will now focus specifically on African Caribbean communities in the boroughs of Hackney, Lambeth and Newham. This reflects The Charity’s new strategic goal to raise awareness of prostate cancer within the African Caribbean community due to the higher risk of developing prostate cancer within this group. Through close partnership work with community and support groups within the three boroughs, men affected by prostate cancer will be recruited to help raise awareness within their communities. The project will be integrated with our national volunteer training programme, but will be a pilot to investigate the best way to involve and support African Caribbean volunteers in the future.

Website e Pubblicazioni Il sito deve contenere tutte le nostre informazioni e articoli Materiale informativo gratuito e diversificato How many hits does the site receive per year?

Cosa possiamo offrire? Materiale informativo gratuito Speaker per gli eventi o stand informativi Mantenere la vostra conoscenza aggiornata attraverso pubblicazioni e seminari gratuiti

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Domande? Thank you Questions? Thank you. Questions? 800 xxxxxxxx Final thought We know we are making progress on knowledge of prostate cancer being most common cancer in men – but that is only starting point. Challenge for us is to get robust evaluation processes in place for our work – starting to happen 800 xxxxxxxx www.urologiarobotica@unicampus.it info@cancroprostata.it