Cancer associated chronic
illness - a new cancer story
Jane Maher
NHS Improvement Lead (cancer)
CMO Macmillan cancer Support
Chair NCSI Consequences of
treatment work stream
Cancer in the UK in 2008
300,000 new cases of cancer in UK in 2008
150,000 cancer deaths in UK in 2008
1
2 million cancer survivors in UK in 2008
10% 65+ are cancer survivors
increasing by 3.2% each year
1
Based on NCIS data for England in 2005.
All figures refer to all malignant neoplasms excluding non-melanoma skin cancer (ICD-10 C00-C97 excl. C44).
1
Current public (& professions’)
view of cancer
Incurable cancer
Cured cancer
.
The new
“incurable cancer “
story
Multiple courses of Chemotherapy
Chronic phase
Actively managing EOL
.
Many people “incurable
with incurablecancer “
cancer can live good quality lives
Not all will die “soon”, many
live with their disease for years
Different “patterns of illness
(chronic, progressive, dying)
Eg looking at survival curves of a
cohort pf patients treated with
“palliative” RT …..
Breast/prostate
Lung
(Other
7.5 months
5 months)
Breast
Prostate
22.3 months
23 months
.
“incurable cancer “
Treatment as early as
possible & for as long as possible
not always the answer
Ovarian cancer (OVO 5) Same Survival :
“early” CT or “wait for symptoms
(Rustin et al 2009)
Early
Median months (95%CI)
25.7 (23.0, 27.9)
Delayed
27.1 (22.8, 30.9)
0.25
0.50
HR=0.98 (95%CI=0.80, 1.20), p=0.85
0.00
Proportion
surviving
0.75
1.00
Overall Survival
0
6
12
Delayed
24
30
36
42
48
54
60
38
38
31
31
22
19
Months since randomisation
Number at risk
Early
18
265
264
247
236
211
203
165
167
131
129
94
103
72
69
51
53
20
15
10
0
0
5
5
Number of patients
10
15
20
Number of patients
25
25
30
30
Overall time with a good Quality of life
shorter if CT given early ( Rustin et al 2009)
0
3
6
9
12
15
18
Number of months spent with good GHS score
21
24
0
3
6
9
12
15
18
Number of months spent with good GHS score
Median (months)
Early
7.1
Delayed 9.2
p=0.15 (Mann-Whitney test)
21
24
.
The new
“cured
cancer”
Story
The first year
is very tough
More cancer, heart disease
& other chronic illness
Life style change
Secondary prevention
?
New Sorts of
illnesses
.
Cured
Cancer
•Lots of people survive cancer
•At least a quarter- unmet needs
from Ca & treatment a year later
•New cancer & treatment related
illnesses emerge months, years,
or
decades
later
25% unmet needs 6 months
After treatment
Armes et al 2009
The year after treatment
79% 1850 patients
(breast, prostate,
gynae, C/R, NHL)
questionnaires at
EOT & 6 months
later (66 centres)
25% unmet needs 6
months after treatment
Armes et al JCO 2009
Cancer survivors - more chronic illnesses
Lifestyle change more important for
cancer survivors than others
Obesity
Dietary fat intake
Exercise
Smoking
UK Health & Well Being survey
( Eliot et al 2010)
Sample (over 30s)
Healthy
N= 4,892
2740
Cancer survivors with or without other
780
chronic conditions
Survivors of other chronic conditions but
1,372
not cancer
Cancer survivors without other chronic
413
conditions
Cancer survivors with other chronic
367
NB: These categories are not all mutually exclusive
conditions
Selected Health and Well-being outcomes
Cancer survivors & CCs versus healthy
(odds ratios)
New chronic conditions
RT & CT related illnesses
eg pelvic cancers
?
• 17,000 / year pelvic RT ( UK )
• gynaecological, urological,
colorectal, anal cancers
• 100,000 living after pelvic RT
• Bowel, urinary ,sexual issues
Severe Adverse events :
5 -10% after 10 years; >10% after 20 years
Stricture
Fistula/
Perforation
Transfusion
dependent
bleeding
Secondary
cancer
Eifel 1995, Nostrant 1995, Denton 2000, Ooi 2000, Andreyev 2005
Severe Adverse events :
5 -10% after 10 years; >10% after 20 years
Stricture
Fistula/
Perforation
Transfusion
dependent
bleeding
Secondary
cancer
Eifel 1995, Nostrant 1995, Denton 2000, Ooi 2000, Andreyev 2005
25-50% Clusters unexplained changes ;
patients don’t tell professionals; neither
connect them with useful interventions
“It’s the little things
put together that wear
us down”
“My Oncologist
asked how I was –
how embarrassing to
tell him”
“”my gp says for a
long time he did not
know what was going
on …I thought I was
……maiking a fuss
Open Letter to my oncologist
Clinical Oncology 2007
19 746- 747
Months /years after pelvic RT
•Symptom Score
Worse
bladder symptoms
bowel symptoms
Better
Time after treatment (months)
Davidson et al 2008
Risk stratification - cancer,
individual, Treatment
Kaiser triangle
Level 3
Highly
Case
Management complex
patients
Specialist Disease
Management
Supporting care
And Self Care
c.j.ham@bham.ac.uk
Bonn conference
Level 2
High risk
patients
Level 1
70-80% of a
Chronic disease pop
Using IT intellegently
GP research database
Patient reported outcomes
Hospital episode statistics
Radiation episode statistics
Cancer registry
Chemotherapy prescriptions
Getting help after treatment –
What do patients think ?
Build one team- words to avoid..
•“Primary”
• “secondary”
•“Discharge”
•Perverse incentives
Cancer patients………
have lots of outpatient
appointments
Cancer patients…
use a lot of beds
…see their GP a lot
… have a lot of tests
Economic modeling ….
Level of need
Estimated number of patients
involved (will vary according to
cancer, individual & treatment )
1 – supported
with (first year)
• Level
More
back self-care
to work
c75% (<10%)
quick access back into the system if
and when needed
to improve early
•Reduce
“empty”
follow up (early ca)
detection
•Reduce bed days (advanced ca)
Level 2 – level of requirement
requiring regular primary or secondary
c20% (90%)
Level 3 – highly complex patients
requiring case management by an
assigned key worker (often a CNS)
actively managing and “joining up” care
c5% (<1%)
•“care input
Red = where we are now
Is cancer a long
term condition ?
•Yes & No ….
“Some
are born great
Some become great
Some have greatness thrust upon them”
Malvolio
Twelfth Night W. Shakespeare
•Some cancers are born chronic •Some cancers become chronic
•Some survivors have chronic illness
thrust upon them
And some are not chronic at all
myeloma
breast & prostate
treatment