Consequences of cancer & its treatment

Jane MaherNHS Improvement Lead (cancer)Chief Medical Officer, Macmillan Cancer Support Chair, NCSI Consequences of treatment work stream

Public view of cancer

Incurable cancer

Cured cancer

Integrated care over time

Diagnosis and treatment Rehabilitation Monitoring End of life care

Chronic and Progressive care:

Cancer &/or consequences

transitions

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Adding the numbers

Using available data and clinically-led assumptions we estimate phases in the survivorship population

Number of people Example Pathways

Using this model we can estimate pathways in different geographies (breast, colorectal and lung)

E.g. Northern Ireland Pathways

Breast cancer care pathway

Colorectal cancer

Lung cancer

Estimating numbers for Northern Ireland

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End of primary

treatment date

Date of treatment

related illness

Date of recurrence

Type of treatment

Date of DS1500

offer

What else do we need to know?

Risk stratification

Staging

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Recovery

The little things altogether…….

It’s the little things all together that

get us down

Penny Vicary

Open Letter to my oncologist Clinical Oncology 200719:746- 747

More lifestyle illnesses

Move More Daily Mail 08 August 2011CIRC: 2,047,206

*Adjusted for smoking and underweight Matched to non-cancer survivor controls on the basis of age, sex and practice

OR: 1.59

More other chronic conditionsosteoporosis & prostate cancer

Nada KhanIn press BJC

*Adjusted for BMI, smoking Matched to non-cancer survivor controls on the basis of age, sex and practice

OR: 1.33

More chronic conditions Heart failure & breast cancer

Nada Khan In press BJC

*Adjusted for BMI, smoking Matched to non-cancer survivor controls on the basis of age, sex and practice

OR: 1.33

More chronic conditions Heart failure & breast cancer

Nada Khan In press BJC

Investment in 1,100Benefit 7,900 people

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Monitoring

Literature review concerning current follow-up after cancer

“A poor evidence base and no consensus as to the intensity, duration, setting or type of follow up required for most common forms of cancer”

Evidence to inform the Cancer Reform Strategy: The clinical effectiveness and cost effectiveness of follow up services after cancer treatment ; York Centre for reviews and dissemination October 2007

(report available on request)

Change from a “one size fits all” approach

Pre-planned tests, triage, access back to specialists via trusted person

Trusted individuals able to provide

Information

Access to tests

Access to expertise

Tools

Ongoing support

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New illnesses

Survivors of childhood cancer

In UK >30,000 survivors of childhood cancer

Increasing by > 1,000/yr

50% are now adults

60% have significant treatment related late consequences which may develop into chronic diseases

23% multiple conditions

No plateau has been reached at 30yrs.

New chronic conditions RT & CT related illnessese.g. pelvic cancers

12 - 17,000/ year pelvic RT (UK)

gynaecological, urological,

colorectal, anal cancers

80,000 living after pelvic RT

Bowel, urinary, sexual issues

6-8,000 new cases radiation related illness

?

LENT SOMA scores for bladder symptoms

LENT SOMA scores for bowel symptoms

Symptom Score

Time after treatment (months)

Worse

Better

Davidson et al 2008

Months/years after pelvic RT

Analysis of symptom clustersBefore RT / End of RT / Up to 3 years after RT

• clusters associated with the highest problem levels usually include faecal urgency & rectal pain.

‘It’s the little things put

together that wear us down.’

‘My GP says for a long time he did not know what was going on…I

thought I was making a fuss.’

‘My oncologist asked how I was – how embarrassing

to tell him.’

Information “prescriptions”

Patients referred to a gastroenterologist a median of 2

years after pelvic RT (n =265)

Rectal bleeding 171

Urgency 82

Frequency 80

Faecal leakage 79

Cancer 12%Unrelated 38%

Most > 1 diagnosis Most could be helped

Andreyev 2005

Guidelines to be published in GUTNovember 2011

Building one team

Diagnosis: Date of Diagnosis: Organ/StagingLocal/Distant

Summary of Treatment and relevant dates: Treatment Aim:

Possible treatment toxicities and / or late effects: Advise entry onto primary care palliative or supportive care register Yes / No

DS 1500 application completedYes/NoPrescription Charge exemption arrangedYes/No

Alert Symptoms that require referral back to specialist team: Contacts for re referrals or queries:In Hours:Out of hours:

Secondary Care Ongoing Management Plan: (tests, appointments etc) .

Other service referrals made: (delete as nec)District Nurse AHPSocial Worker DieticianClinical Nurse Specialist Psychologist Benefits/Advice ServiceOther

Required GP actions in addition to GP Cancer Care Review (e.g. ongoing medication, osteoporosis and cardiac screening) Summary of information given to the patient about their cancer and future progress:

Additional information including issues relating to lifestyle and support needs:

Treatment Summary Insert GP Contact Details

Insert Trust Logo and AddressDear Dr XRe: Add in patient name, address, date of birth and record numberYour patient has now completed their initial treatment for cancer and a summary of their diagnosis, treatment and ongoing management plan are outlined below. The patient has a copy of this summary.

Working with professionals

• To improve care for people living with the effects of cancer • Bridge the gap between research and practice• Individual and collective projects• Influencing UK research and policy agenda

12 Post Doc nurses & AHPS taking the agenda forward.

Nurses & AHPs http://www.cancerconsequences.org/index.html

Raising awareness

Integrated care over time

Diagnosis and treatment Rehabilitation Monitoring End of life care

Chronic and Progressive care:

Cancer &/or consequences

transitions