Transcript FINALPresentation Parliamentary bkfast 7 May 2015nonotesx

The management of metastatic
prostate cancer in New Zealand –
room for improvement?
Ross Lawrenson, Charis Brown, Nina Scott, Chunhuan Lao, Michael Holmes,
Zuzana Obertová, Peter Fong, Leanne Tyrie, George Laking, Peter Gilling
Cancer Research Centre
Waikato Clinical Campus
University of Auckland
Acknowledgements
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HRC
Ministry of Health
Waikato Medical Research Foundation
Prostate Cancer Foundation
Sarah FitzGibbons Bequest
Janssen Pharmaceuticals
Background
• 3000 NZ men p/a are diagnosed with prostate cancer
• 560 will die each year from metastatic prostate cancer
• 60% of these men had metastatic disease at first
diagnosis
• 25,000 NZ men are living with a diagnosis of prostate
cancer
• There are no agreed New Zealand guidelines for the
management of metastatic prostate cancer
Hypothesis
• Improved management of men with
metastatic disease would help increase
survival from prostate cancer and improve
quality of life
Prostate cancer
American Joint Committee on
Cancer (AJCC) Staging System
• The AJCC staging system is based on 3 factors
– T: the size, extent, and penetration of the tumor
– N: the number or location of cancer-involved
lymph nodes
– M: the presence of sites of metastases
American Joint Committee on Cancer. American Joint Committee on Cancer. Cancer Staging: What You Need to Know?
Chicago, IL: American Joint Committee on Cancer; 2010.
T4 Prostate Cancer –
regional/distant spread
Illustration courtesy of the American Society of Clinical Oncology
Age standardised incidence of prostate cancer in NZ
1948 to 2008 per 100,000 men
Characteristics of 535 men with prostate cancer
– 65 (12.1% with metastases)
90
• 19% Maori
diagnosed with
metastatic
disease
• 10% of NZ
Europeans
80
70
60
50
40
30
20
10
0
40-59
Local
60-69
70-79
Local spread
80+
Mets
Outcomes from prostate cancer
Outcomes from prostate cancer
= UK survival
Outcomes for Māori – all cases and
non localised cases
All cancers
cancer-specific HR 2.01
[95% CI, 1.21, 3.36]
Non-localised cancers
Cancer-specific HR 2.95
[95% CI, 2.31, 3.77]
Recommendations from the
Prostate Cancer Taskforce – MoH
2012
Metastatic prostate cancer
36. New Zealand Clinical Practice Guidelines
are developed for metastatic prostate cancer.
37. Research is undertaken to determine the
burden of disease and reduce inequities in
Māori men with metastatic prostate cancer.
Treatment of Metastatic Prostate
Cancer – the Map of Medicine
pathway
Hormone therapy
• Hormone therapy – or androgen deprivation therapy (ADT) may
involve bilateral orchidectomy (castration) or pharmacologic therapy.
• Two types of pharmacologic ADT – anti androgens and luteinizing
hormone-releasing hormone (LHRH) agonists
• These treatments which can be used sequentially and in
combination.
• There is limited evidence on the optimal sequencing and
combination of these treatments.
Other treatments
• Chemotherapy, in particular docetaxel
(Approved by PHARMAC in 2011)
• Palliative radiation treatment
• Palliative, supportive and hospice care
The Metastatic Prostate Cancer Study
Three areas of investigation:
1.Investigation of the management of
metastatic prostate cancer using National
data (2006-2011)
2.Pathways and cost of care for metastatic
PCa patients in the Midland Cancer Network
(2009-2012)
3.Men’s perspective on living with metastatic
prostate cancer
Study One
Method
• Used data from the National Cancer registry
• Men aged 40+ yrs diagnosed with prostate cancer
(ICD10 C61) between 1 Jan 2006 and 31 Dec 2011
• Linked the data to the National Pharmaceutical
database identifying use of Androgen Deprivation
Therapy and Chemotherapy
• Linked the cases to the national Minimum Data Set
from hospitals to identify those who had an
orchidectomy
National Cancer Registry data
2006 to 2011
• Identified 15,947 new cases of prostate cancer
• 11,432 (72%) the stage of diagnosis was not
recorded
• 4515 cases were staged
– 2385 (53%) were localised
– 1205 (27%) classified as local spread
– 925 (20%) classified as metastatic
National Cancer Registry data
Māori 2006 to 2011
• Identified 908 new cases of prostate
cancer
• 684 (76%) the stage of diagnosis was not
recorded
• 224 cases were staged
– 83 (37%) were localised
– 61 (27%) classified as local spread
– 80 (36%) classified as metastatic
Treatment
• 4978/15947 men (31.2%) received ADT or
chemotherapy within first year post-diagnosis
• 24 men (0.2%) received chemotherapy: most
common doxorubicin (11), docetaxel (5)
• Orchidectomy: 2.3% (367/15,947); 165 with
pharmacologic ADT
Use of Pharmacologic ADT by ethnicity
(first 12 mnths of dx)
71.8%
(664/925)
22.1% (266/1205)
31.2% (4978/15947)
Lawrenson, et al. J Cancer. 2014; 5(3): 214–220. Published online Feb 14, 2014. doi: 10.7150/jca.8152
Māori compared with non-Māori
• Māori men with metastatic disease were more
likely to receive anti-androgen treatment (72.5%)
compared with non Māori (58.2%)
• Māori men were more likely to be treated with
orchidectomy (3.2%) compared to non Māori
(2.2%)
Study Two
Method
• Identified 2127 patients diagnosed with prostate
cancer in the Midland Cancer Network region from the
NZ Cancer Registry (2009-2012)
• Clinical notes reviewed and all patients staged
• Linked the patient records of those staged as
metastatic to the Pharmaceutical and Mortality
national data sets
• Costing data from National Hospital data and Waikato
District Health Board costing data
Distribution of sample by age and
ethnicity: 234 men (11.0%) metastatic
100
90
80
70
60
50
40
30
20
10
0
40-59
60-69
Non Māori
70-79
Māori
80+
Outcomes for Māori and non Māori with metastatic prostate
cancer (n=234)
Maori
Characteristics of patients treated
Number of
patients
Radiotherapy
ADT
Chemotherapy
Ethnicity
Maori/Pacific
26
50.0%
80.8%
0
non-Maori/nonPacific
208
39.4%
83.2%
2.4%
Age
<60
17
70.6%
94.1%
5.9%
60-69
53
50.9%
90.6%
3.8%
70-79
73
35.6%
84.9%
2.7%
80+
91
33.0%
74.7%
-
Total
234
40.6%
82.9%
2.1%
ADT type after metastatic diagnosis
by department
Combined
Luteinizing hormone
androgen Total (n)
releasing hormone
blockade
Anti-androgens
Bicalutamide
Cyproterone
Flutamide
acetate
Goserelin
acetate
Leuprorelin
Oncology
6.5%
16.1%
6.5%
35.5%
-
35.5%
31
Urology
5.8%
28.8%
28.1%
7.9%
18.7%
10.8%
139
Others
6.3%
43.8%
18.8%
-
18.8%
12.5%
16
N/A
12.5%
25.0%
37.5%
12.5%
12.5%
-
8
Total
(12/194)
6.2%
(54/194)
27.8%
(47/194)
24.2%
(23/194)
11.9%
(30/194)
15.5%
(28/194)
14.4%
194/194
(100.0%)
Number of PSA tests in the first
12 months after starting ADT
STUDY THREE:
Patient insights into the
management of metastatic
prostate cancer
Why do this research?
 Paucity of research about metastatic disease
and men's experiences
 Variation in pathways for localised disease
 Men identified a lack of information
particularly about supportive care with
localised prostate cancer
 Unmet needs remain (3-6yr post diagnosis)
 Health system and information
 Patient care and support
 Psychological supportive care needs
What was the point?
Study Question: “What are the experiences
of men on the metastatic prostate cancer
journey?”
Aim: To understand the patient perspective
• Understanding condition
• Questions and concerns
• Access and use of supportive care
services
• The future
What did we do?
• Men identified from study two were mailed invitations by
uro-genital specialist nurse (Midland wide)
• In-depth interviews, topic prompts
• Interviewers: Charis Brown and Dr Nina Scott (Māori men)
• Partner involved where available
Analyses
• NVivo 10 (QSR International)
• Thematic analysis undertaken by two researchers
• Review of preliminary themes by wider team
WHAT WE FOUND
Participants
Age at diagnosis
<70 years
70+years
Year of diagnosis
2009 and 2010
2011 and 2012
Key support person
Wife
Other family
Health Professional
ADT
Yes
No
Maori
(n=4)
Non-Maori
(n=8)
75%
25%
62.5%
37.5%
0%
100%
50%
50%
50%
25%
25%
87.5%
12.5%
0%
100%
87.5%
12.5%
Topics, themes and sub-themes
AT DIAGNOSIS
• Understanding
the diagnosis
• Difficulty in
understanding
• Environment
and support
POST DIAGNOSIS
• Understanding
the condition
• Discussing
treatment
• Sourcing
information
• Comprehension
of information
CURRENT
• Perception of
health state
• Unanswered
questions
• Self-blame
• Awareness and
use of support
services
• Counselling
• Care in the
home
• Hospice
• Family support
FUTURE
• Awareness of
future
• The unknown
Understanding the diagnosis
• I thought I had just hurt my back
• 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
• No, it didn’t sink in at all.
• 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. …it said
that “his ribs, and in his spine” and 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.
Understanding next
steps
• 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 sort of lost my way a bit.
• 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.
Uncertainty around medication taking
• 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.
• I was offered chemotherapy, I have no symptoms, I
have no pain, so why make me crook…?
• [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.
Current Questions
• …I’ve gone from nothing to now 2.97[PSA]... It
shot up to there and I don’t know whether that’s
good, bad or indifferent
• I’m just scared …[the doctor] said to me that I
need a scan
• I don’t know what’s going on!?
• …what the hell’s happening?
• I want to know now and if it’s increasing what’s
the reason? I don’t know. Haven’t got a clue…
Fault and 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…
Perceptions of Hospice
•
My fear was that they wanted me to go into the
Hospice. I knew they had beds there and I
wouldn’t get out of the place. I would die
there.
•
…I was actually horrified when they turned
up here cos I thought you had Hospice when
you’re dying.
•
It’s just that I’ve only ever heard of people going
in [to Hospice] as the last resort
•
…the question my wife and I were thinking was
what is [it] you know? We know what Hospice is,
so what does this mean? Do they know
something that I don’t know?
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.
•
Well I should have, I should have just done something
about it and I haven’t.
•
[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.
The Future 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?
•
…Will my bones become soft or crumbly?
…those spots are they the right spots?
What does this all mean?
• Low levels of functional health literacy
• Very low levels of critical health literacy
• Need guidelines about process for
supportive care referral
• Bridging the gap (by increasing
awareness) between health services and
community support services.
• Lack of information specific stage four
cancer
OVERALL
Overall Summary
•11% of men present with metastatic disease p/a
•Only 28% of prostate cancers on the National Cancer Registry are
staged
•Variation in ADT treatment and monitoring
•A need to define ‘progression’
•Apparent under-use of chemotherapy
•Lack of guidelines around the management of metastatic disease
and the management of hormone refractory disease
•Lack of information tailored to specific stage, level of cancer
progression, and medication (including side effects)
•Lack of knowledge and access to supportive care services
The Way Forward
•Explore ways of ensuring staging data is routinely supplied to the
National Cancer Registry
•Develop National Guidelines for the management of metastatic
prostate cancer
•More patients could be presented and reviewed at MDM with
medical oncologist
•Improving critical health literacy through health education and
communication needs to be a shared goal to improve outcomes
•Consider the involvement of general practitioners in the ongoing
monitoring and management of men with advanced prostate cancer
to ensure information needs and psychosocial support is in place
THANK YOU