The Needs Of Men Living With Prostate Cancer.

Transcription

1 Charis Brown On Behalf Of the Midland Primary Care Cancer Team The Needs Of Men Living With Prostate Cancer. What Are They

2 The Prostate Challenge Typically curative & lower needs Life limiting & higher needs

3 Mortality

4 Variation Variation in the management of men: Who get tested Men with a first raised PSA Who get referred, biopsied GP initiates PSA test most of the time Some men had no idea they were being PSA tested Lack of communication particularly regarding informed consent to be PSA tested Lack of awareness about if monitoring was occurring and who was doing this

5 Our Questions Did men understand their condition Did PC impact their lives What was the impact of PC Did men need support Did men have support Were there differences by extent of disease If so, what were these

6 What Did We Do

7 Purpose: Study 1 To identify the costs and complications of diagnosis and/or treatment for Localised Prostate Cancer Purpose: Study 2 To understand the experiences of men living with a Metastatic Prostate Cancer diagnosis

8 Findings

9 Localised Prostate Cancer On-going, primarily around key decision points General Health Quality of Life Anxiety, Stress & Depression Supportive Care Needs Social Intimacy Sexual Function & Activity EORTC QLQ-C30 EORTC PR25 HADS & DASS Miller SCNS EQ-5D IIEF-SF & FSFI-SF

10 General Health & Quality of Life Global Health Status Physical Function Role Function Social Function

11 Sexual Function & Activity Men rated sexual activity as important 9 out of 10 men identified changes in their sexual experience post-treatment 6 out of 10 men reported that they had been asked by a health professional about their sexual function 6 out of 10 men felt they had received good advice about their sexual function HOWEVER.

12 Tried Sexual Aids Penile Rings Vacuum devices <1/10 Injections of vasoactive agents Phosphodiesterase-5 (PDE5) inhibitors <3/10

13 Supportive Care Needs (SCN) Higher score = Worse off 70+year PCa 5-9months (n=~243)(a) Long-term Pca 5-6 years (n=~126)(b) Maori (n=20) Non-Maori (n=86) All Midlands (n=106) Psychological 16.9± ± ±23.9(b) 16.5± ±21.3 Health system & information 15.3± ± ±33(a) 12.4±19.8(M) 14.6±23.2 Physical and daily living 18.3± ± ± ±20.4 (a+b) 14.4±21.1 Patient care and support 11.2± ± ±25.7(a) 11.0± ±18.1

14 Other Supportive Care Post-Treatment 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Have you received any counselling or psychological support related to living with prostate cancer? Have you received any social support for living with prostate cancer? Have you received any spiritual support for living with prostate cancer? No Yes

15 Localised Prostate Cancer Met & Unmet Need 3-6years post-diagnosis: Men's Function and Symptoms appear to be addressed Quality of life returns to normal Social participation high Sexual activity high Sexual function low support not all that it appears Supportive Care Needs remain unmet for Maori men Psychological Health system & information Patient Care and Support Counselling not happening

16 Findings

17 Metastatic Prostate Cancer Complex, high need: Increasing over time Understanding Diagnosis Next Steps Relevant Knowledge? Medication Supportive Care The future

18 Understanding the Diagnosis I didn t really comprehend it they said I had prostate cancer and I thought I never had prostate cancer it doesn t hit you like that I saw his mouth open and close but didn t hear what was coming out it was the discharge papers from the hospital that had it written on it. I had no idea. that s the only information that we had and I hadn t really discussed it with [my husband] because I thought I ll leave well enough alone.

19 The Journey when I came home I thought, oh well, that s it, because they didn t say that you ll come back for radiation or treatment I didn t know what was going to happen and I still don t know what s going to happen... I ve seen a lot of pamphlets out there with diagnosis and what goes on but they don t tell you the journey. You know the journey from the time you get diagnosed from the doctor then you go up to the hospital all that I didn t know about you know I just go up for an appointment.

20 Assumptions & Uncertainty I got castrated chemically and he didn t discuss it I didn t know that was a capsule in there when I first got it in there until I went to see [oncologist] and she said, lift your shirt up? What? In there she said. You ve had a capsule put in. [the specialist] reckoned I can only be on it [type of ADT] for 18 months and after 18 months they have to stop. Be 18 months this Christmas All I ve got is 18 months of injections and what happens after 18 months? I don t know.

21 Fault & Blame I don t listen very well even though I m a good listener I didn t ask the questions correctly, I think. You know that was my fault. I don t think I was able to understand or comprehend it I wouldn t be able to express myself personally so I think I m, well, I am the problem. There s been a lot of hiccups along the way. It was just a series of little mishaps....it was probably our fault

22 Access to Counselling Nah, never been offered I really do think that anyone that s got prostate cancer or anything like that needs counselling. I would have done, yes, yes. I would have done. [Counselling] may have helped us talk a little bit more about it. [My wife] thinks I don t want to talk about it. It s not the case.

23 The Unknown It would be good to know that there s symptoms, that s going to happen and to look for it. You re at home by yourself what then my hand might be twitching like this and you think is that part of it or what? What happens at the end? What am I gonna look forward to? That s where fear comes. will there be more radiation or is he gonna be just sent home to pass away?

24 Metastatic Prostate Cancer Met & Unmet Need Know condition Know journey Know who to ask (and comfortable to approach) Clear expectations Questions answered Improving communication

25 Small change, Big gains Clear guidelines for the stage specific ongoing management of prostate cancer Need guidelines about process for supportive care referral Clear stage specific information for men and their whanau No assumptions about knowledge of men and their whanau Awareness & referral to supportive care services early on in cancer life cycle Bridging the gap (by increasing awareness) between health services and community support services. Completing the communication cycle - feedback

26 Thanks to Men and their partners GPs involved in the research HRC and MoH Auckland UniServices Janssen-Cilag Midland Cancer Network and our partner DHBs Waikato/Bay of Plenty Cancer Society Prostate Cancer Foundation Iwi Māori Council and Kaumātua Kaunihera Group Hei Pa Harakeke Professor Ross Lawrenson (University of Auckland (UOA)) Dr Charis Brown (UOA) Dr Zuzana Obertova (UOA) Ms Chunhuan Lao (UOA) Ms Alice Wang (UOA) Mrs Thilini Alwis (UOA) Mrs Diana Benfell (UOA) Dr Leanne Tyrie (WDHB) Ms Jan Smith (MCN) Dr Charles DeGroot Mr Michael Holmes (WDHB) Ms Lyn Walker (WDHB) Dr Nina Scott Ngati Whatua, Waikato (WDHB) AProf Peter Gilling (BOP DHB) Dr Helen Conaglen (UOA) Dr Peter Fong (ADHB) Professor John Conaglen (UOA) Dr Fraser Hodgson (GP) AProfessor Alistair Stewart (UOA) AProfessor Paul Rouse (UOA) Professor Toni Ashton (UOA) Mr John Woodford (Pathlab) Dr Barry Smith Te Rarawa, Ngati Kahu (Lakes DHB) Professor Lynn Fergusson (UOA) Dr Jim Watson (Caldera Health) Dr Geraldine Leydon (University of Southampton, UK) Mr David Musgrave (Formerly Caldera Health) Dr George Laking: Te Whakatōhea (ADHB and UOA) Dr Richard Edlin (UOA) Mr Graham Harbutt (Formerly Waikato Cancer Society) Mr Dene Ainsworth Te Ātiawa (PCF) Mr Jack Porima Ngati Hikairoa (Hauora Waikato) Mr Jeffery Morse (Counsellor) Mr Rawiri Blundell Ngati Porou ki uawa (MCN) Ms Margie Hamilton (MCN) Mr Tamati Peni Raukawa (WDHB) Mrs Tiffany Schwass (WDHB) Mrs Lauren James Ngati Whakaue, Te Arawa, Tuhoe (Lakes DHB)