Cancer associated chronic illness - a new cancer story Jane Maher NHS Improvement Lead (cancer) CMO...

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 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).

Current public (& professions’) view of cancer

Incurable cancer Cured cancer

.

The new “incurable cancer “story

Chronic phase

Multiple courses of Chemotherapy

Actively managing EOL

.

“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)

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

.

“incurable cancer “Treatment as early as possible & for as long as possible not always the answer

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)

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)

.

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

.

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

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)

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

Selected Health and Well-being outcomes Cancer survivors & CCs versus healthy

(odds ratios)

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

?

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

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

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

bladder symptoms

bowel symptoms

•Symptom Score

Time after treatment (months)

Worse

Better

Davidson et al 2008

Months /years after pelvic RT

c.j.ham@bham.ac.uk 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

Cancer registry

Radiation episode statistics

Chemotherapy prescriptions

Hospital episode statistics

GP research database

Patient reported outcomes

Using IT intellegently

Getting help after treatment – What do patients think ?

Build one team- words to avoid..

•“Primary”• “secondary” •“Discharge”

•Perverse incentives

Cancer patients…

… use a lot of beds

have lots of outpatient appointments

…see their GP a lot… have a lot of tests

Cancer patients………

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)

•“

Is cancer a long term condition ?

•Yes & No ….

“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