cancer associated chronic illness - a new cancer story jane maher nhs improvement lead (cancer) cmo...
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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
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Cancer in the UK in 2008
300,000 new cases of cancer in UK in 20081
150,000 cancer deaths in UK in 20081
2 million cancer survivors in UK in 2008
10% 65+ are cancer survivors
increasing by 3.2% each year1 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).
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Current public (& professions’) view of cancer
Incurable cancer Cured cancer
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The new “incurable cancer “story
Chronic phase
Multiple courses of Chemotherapy
Actively managing EOL
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“incurable cancer “Many people with incurable 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)
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Eg looking at survival curves of a cohort pf patients treated with “palliative” RT …..
Lung 7.5 months (Other 5 months)
Breast 22.3 monthsProstate 23 months
Breast/prostate
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“incurable cancer “Treatment as early as possible & for as long as possible not always the answer
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Overall Survival
HR=0.98 (95%CI=0.80, 1.20), p=0.85
0.00
0.25
0.50
0.75
1.00
Pro
po
rtio
n
surv
ivin
g
264 236 203 167 129 103 69 53 38 31 19Delayed265 247 211 165 131 94 72 51 38 31 22Early
Number at risk
0 6 12 18 24 30 36 42 48 54 60
Months since randomisation
Median months (95%CI)Early 25.7 (23.0, 27.9)
Delayed 27.1 (22.8, 30.9)
Ovarian cancer (OVO 5) Same Survival : “early” CT or “wait for symptoms
(Rustin et al 2009)
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Median (months)Early 7.1 Delayed 9.2
p=0.15 (Mann-Whitney test)
05
1015
2025
30
Nu
mb
er o
f p
atie
nts
0 3 6 9 12 15 18 21 24
Number of months spent with good GHS score
05
1015
2025
30
Nu
mb
er o
f p
atie
nts
0 3 6 9 12 15 18 21 24
Number of months spent with good GHS score
Overall time with a good Quality of life shorter if CT given early ( Rustin et al 2009)
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The new “cured cancer” Story
?Life style change Secondary prevention
The first year is very tough
More cancer, heart disease & other chronic illness
New Sorts of illnesses
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Cured Cancer
25% unmet needs 6 months After treatment Armes et al 2009
•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
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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
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Cancer survivors - more chronic illnesses Lifestyle change more important for cancer survivors than others
Obesity
Dietary fat intake
Exercise
Smoking
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UK Health & Well Being survey ( Eliot et al 2010)
NB: These categories are not all mutually exclusive
Sample (over 30s)
Healthy
N= 4,892
2740
Cancer survivors with or without other chronic conditions
780
Survivors of other chronic conditions but not cancer
1,372
Cancer survivors without other chronic conditions
413
Cancer survivors with other chronic conditions
367
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Selected Health and Well-being outcomes Cancer survivors & CCs versus healthy
(odds ratios)
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New chronic conditions RT & CT related illnesseseg pelvic cancers
• 17,000 / year pelvic RT ( UK )
• gynaecological, urological, colorectal, anal cancers
• 100,000 living after pelvic RT
• Bowel, urinary ,sexual issues
?
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Severe Adverse events : 5 -10% after 10 years; >10% after 20 years
Eifel 1995, Nostrant 1995, Denton 2000, Ooi 2000, Andreyev 2005
Stricture
Fistula/Perforatio
n
Transfusion
dependent bleeding
Secondary cancer
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Severe Adverse events : 5 -10% after 10 years; >10% after 20 years
Eifel 1995, Nostrant 1995, Denton 2000, Ooi 2000, Andreyev 2005
Stricture
Fistula/Perforatio
n
Transfusion
dependent bleeding
Secondary cancer
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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”
Open Letter to my oncologist Clinical Oncology 200719 746- 747
“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
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bladder symptoms
bowel symptoms
•Symptom Score
Time after treatment (months)
Worse
Better
Davidson et al 2008
Months /years after pelvic RT
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[email protected] Bonn conference
Risk stratification - cancer, individual, Treatment Kaiser triangle
Case Management
Specialist Disease Management
Supporting care And Self Care
Level 1 70-80% of a Chronic disease pop
Level 2 High risk patients
Level 3 Highly complex patients
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Cancer registry
Radiation episode statistics
Chemotherapy prescriptions
Hospital episode statistics
GP research database
Patient reported outcomes
Using IT intellegently
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Getting help after treatment – What do patients think ?
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Build one team- words to avoid..
•“Primary”• “secondary” •“Discharge”
•Perverse incentives
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Cancer patients…
… use a lot of beds
have lots of outpatient appointments
…see their GP a lot… have a lot of tests
Cancer patients………
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Level of need Estimated number of patients involved (will vary according to cancer, individual & treatment )
Level 1 – supported self-care with quick access back into the system if and when needed to improve early detection
c75% (<10%)
Level 2 – level of requirement requiring regular primary or secondary
care input
c20% (90%)
Level 3 – highly complex patients requiring case management by an assigned key worker (often a CNS) actively managing and “joining up” care for the patient
c5% (<1%)
Red = where we are now
Economic modeling ….
• More back to work (first year) •Reduce “empty” follow up (early ca) •Reduce bed days (advanced ca)
•“
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Is cancer a long term condition ?
•Yes & No ….
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“Some are born greatSome become great Some have greatness thrust upon them”
Malvolio Twelfth Night W. Shakespeare
•Some cancers are born chronic - myeloma •Some cancers become chronic breast & prostate •Some survivors have chronic illness thrust upon them treatment
And some are not chronic at all