Developing a national strategy for research into cancer survivorship in the

UK

Irish Cancer SocietySurvivorship Research Day

19th September 2013

Jim Elliott PhDjim@drakesyard.co.uk

Outline - the story

• Origins of survivorship research strategy in the UK - The Macmillan Listening Study / Yesterday’s Women

• Developing a national focus for survivorship - National Cancer Survivorship Initiative

• NCSI strategy - Evidence review / Health and wellbeing survey / Research Workstream report

• Key elements of a national research strategy:

– Prevalence data– Health service data - National Cancer Intelligence Network– Use of data - Natural history / Routes from Diagnosis– Interventions, outcomes and experience– Building capacity

• Recommendations for Ireland?

My background

• Macmillan Cancer Support Head of Research

• NCSI Research Workstream

• Cancer carer

• Independent Cancer Patients Voice

• NCRI Primary Care CSG Survivorship sub-group

Macmillan Listening Study•First study to explore perceptions of cancer research of people affected by the disease (2004-2006)•Determined the priorities for research of people with cancer and enabled them to influence the direction of cancer research•Participatory and exploratory, qualitative study using consultation groups•105 people in 12 consultation groups across the UK, broadly representative of the UK population

Rank Key theme Total rank score [Possible Range: 1 – 102]

No. consultation groups in which topic received at least one vote N=17

1 Impact on life, how to live with cancer and related support issues

68 13

2 Risk factors and causes 58 12 3 Early detection and prevention 48 9 4 Research into general information needs (on

cancer, treatment, research and access to) 34 11

5 Use and effectiveness of complementary and alternative therapies

30 7

6 General education of public about cancer 24 5 7 Research into different cancer and patient types 23 7 7 Research on treatment (curative treatment,

treatment types and improvements) 23 5

7 Experiences and management of side effects 23 7 8 Organisation and funding of health and social

care services 21 6

9 Coordination, impact and funding of research 19 4 10 Research into recurrence 11 3 11 General communication issues involving all

parties 10 3

12 Accessing patients’ views about cancer, services and research

9 2

13 Health and safety in the hospital 1 1 Corner, J. et al., (2007) The research priorities of patients attending UK cancer treatment centres: Findings from a modified nominal group study. British Journal of Cancer, 96(6), 875-881.

Yesterday’s Women

• Macmillan report about R.A.G.E (Radiotherapy Action Group Exposure)

• Women treated with radiotherapy in early 1980s for breast cancer after surgery

• Over dosing caused severe acute effects (burning) and 5 to 7 years later severe neurological late effects, many losing the use of one and some both arms

Hanley B, Staley K. Yesterday’s Women. The Story of R.A.G.E. (Macmillan Cancer Support, 2006).

Yesterday’s Women

• Attempts to seek treatment and compensation met with resistance and closing of professional ranks:

• “.. the hospital kept denying to me that there was any problem at all. My request to see a radiologist was refused ‘There was no point’. The consultant almost reduced me to tears. I was ‘neurotic, arthritic’ and it was ‘all in my mind’. My husband was advised to ‘trade me in for one that doesn’t moan’!!”

Yesterday’s Women

• Nearly 30 years after their treatment those women still alive are only just now getting some of the recognition and care they should have had when the problems first arose

• An extreme case but an important lesson about the risks in treating cancer and that life does not always return to “normal”

• Part of the case for developing NCSI

A national focus for survivorship

• National Cancer Survivorship Initiative (NCSI)

• Joint initiative by Department of Health, Macmillan Cancer Support and NHS Improvement to address the long term [unmet] needs of people living with and beyond cancer

• 2010 Vision to ensure that survivors get the care and support they need to lead as healthy and active a life as possible, for as long as possible

10

NCSI Survivorship pathway and five key shifts

• Cultural shift to recovery, health and wellbeing

• Holistic assessment and personalised care planning

• Supportive self management

• Tailored aftercare

• Routine measurement of experience and outcomes

Scale of the issue

• 2 million cancer survivors in the UK in 2010*,

• 1.24 million (62%) diagnosed > 5 years ago*

• 500k (25%) in poor health*

• In Ireland:

– 104k 17-year prevalence (National Cancer Registry Annual Report 2013)

– Estimate 147k total survivors based on UK data– Approx. 91k diagnosed > 5 years ago and

37k in poor health?

*Macmillan Cancer Support, Throwing light on the consequences of cancer and its treatment, 2013

NCSI vision / aims for research

• Understand the current evidence on survivorship and identify key gaps

• Develop a strategic framework to address the priority areas of need / uncertainty, with....

• A strong focus on practical interventions to improve the experience, health and wellbeing of people living with cancer, and....

• Develop tools to assess the likelihood and significance of different events occurring to enable timely, relevant and effective support

Defining survivorship= consequences of cancer and its treatment

PersonDemographics

LifestyleCo-morbidies

TumourSite(s)Stage

Health and wellbeing survey

• 4892 participants > 30 yrs

• 780 cancer survivors, 367 also with 1 or more of 10 chronic conditions

• 1,372 people with 1 or more of 10 chronic conditions

• 2,780 “healthy” people

• 13 measures of health and wellbeing including social issues about work and finances

Health and wellbeing survey results

0

2

4

6

8

10

12

14

16

Cancer survivorswith no chronic

conditions

Cancer survivorswith one or more

chronic conditions

One chroniccondition

Two or morechronic conditions

Oddsratio

Estimated adjusted odds ratios with corresponding confidence intervals

Elliott J, Fallows A, Staetsky L, Smith PWF, Foster CL, Maher EJ and Corner J. 2011. The health and well-being of cancer survivors in the UK: findings from a population-based survey. British Journal of Cancer 105, S11–S20

0

2

4

6

8

10

12

Cancer survivorswith no chronic

conditions

Cancer survivorswith one or more

chronic conditions

One chroniccondition

Two or more chronicconditions

Oddsratio

General Health Health prevented working in preferred occupation

Cancer survivors significantly more likely to report poor outcomes across all 13 measures than those with no history of cancer or chronic conditions

NCSI research worksteam approach • Following on from the Health and Well-being Survey

• Mapping of survivorship ‘journey’ – carried out for prostate, lung, breast and colorectal cancer and for the less common cancers (Cancer 52) – involving internal and external stakeholder consultation

• Evidence review to assess the knowns and not knowns of survivorship research

• Research workstream report to indicate priorities for research questions for new research programme

Comprehensive review of the evidence base

• Carried out by CECo and COMPASS NCRI supportive and palliative care research collaborative groups

• ‘Evidence’ considered includes published literature + unpublished reports and studies, ongoing research and collections of quality of life data

• Included consultation with the research, charity and cancer survivor communities

• The emphasis was on finding practical solutions

Fatigue & physical functioning

Problem

• Strong evidence experienced in short term, modest evidence in longer term

Solution

• Some evidence for patient education, rehabilitative approaches (exercise + CBT)

Best buys

<2 yrs a) Pilot/feasibility studies on fatigue assessment

b) Study barriers to fatigue management implementation

2-5 yrs Large multi-centre fatigue management studies

>5 yrs Prospective cohort studies with age matched controls

Emotional distress & anxiety

Problem

• Moderately strong evidence post treatment, some evidence in longer term (recurrence)

Solution

• CBT, aromatherapy for short-term relief, exercise

Best buys

<2 yrs a) Assess prevalence & risk factors (secondary analysis)

b) Pilot/feasibility studies on detection & intervention methods

2-5 yrs Large trials of patient education, guided self-help, telephone interventions (CBT) and fear of recurrence (CBT)

>5 yrs a) large prospective cohort studies (mixed cancers)

b) studies to improve understanding, identification & management in specific groups (men, BME groups)

Findings from research work stream

• Some good research across many aspects of the survivorship journey but:

• Survivorship research lacks any formal identity and thus strategic direction

• Issues and problems faced by cancer survivors not systematically identified and quantified

• Solutions not necessarily focussed on greatest areas of need / what is important to patients

• Poor implementation of existing research21

Recommendations of research work stream: priorities for research

• Understanding the natural history of survivorship and creation of risk stratification tools

• Targeting of interventions based on natural history and addressing ‘best buys’ from evidence review

• Systematic development of routine patient-driven outcome measures

• Evaluation of interventions & models of care including economic evaluation

22

Recommendations of research work stream: infrastructure

• Development of a national strategy for survivorship research aligned to NCSI vision and five key shifts in care and support

• Coordination of research funding across the UK focussed on larger studies and use of existing cohorts wherever possible

• Greater collaboration between researchers and links beyond cancer

23

Key elements of a national survivorship research strategy

• Prevalence data

• Health service data - National Cancer Intelligence Network

• Use of data - Natural history / Routes from Diagnosis

• Interventions, outcomes and experience

• Macmillan Cancer Population Evidence Programme

Prevalence data

• Incidence and mortality data: treatment and prevention research

• Prevalence data: survivorship research

• Stratify survivors by:

– Diagnosis– Time since diagnosis– Treatment– Co-morbidities – Demographics

26

Prevalence by site differs from incidence and mortality by site

0

5

10

15

20

25

30

Colorectal Lung Prostate Breast

Per c

ent Incidence

MortalityPrevalence

Based on England 2004

The cancer care pathway

Diagnosis & Treatment

Recovery and adjustment

Early monitoring

End of life care[Year 1 deaths]

Progressive illness

Later monitoring

Newly diagnosed –

assumed need of acute

sector care

Surviving the first year –

assumed need of rehabilitation

Up to 5 and 10 years from diagnosis –

designated as ‘early

monitoring’

Incurable disease but not in last year of

life

End of life care in last year

Beyond 10 years from diagnosis – designated

‘later monitoring’

Tra n s i ti o n Po i n t s

9

Different cancers have different ‘shapes’

Using health service data

DiagnosisIncidence

DeathMortalityPrevalence

Collect treatment, care, experiences and outcome data throughout the cancer journey

National Cancer Data Repository

Cancer Registry

National Cancer Intelligence Network

Natural history

• Using clinical attendance patterns to define cancer survivorship = Routes from Diagnosis

• Better understanding of the health consequences of cancer and its treatment

• Link with cancer prevalence data

• To enable the development of risk stratified pathways to inform care and support

Macmillan and NCIN are working in partnership to develop a greater understanding of the Cancer Population

• Segmenting the cancer population• Routes from Diagnosis• Developing routine survivorship stats• Outcomes and Experience• Costing • Social Care

UK wide and country specific analysis

Costs of inpatient

care pathway

Hospital Episode Statistics

National Cancer

Data Repositor

y

Patient experience

Other

outcome

sIs there a link?

Segmenting the cancer

population

Identifying progressive

disease

We know more about clinical outcomes –

beyond just survival

We know more about how they interact with the system

We know more about how the costs of clinical journey varies depending on complexity and

length of survivorship

Macmillan’s Routes from Diagnosis Programme

Interventions• Still a need for trials and other well designed

studies to develop and evaluate interventions for specific conditions

• Currently left to individual research teams [still] in absence of collaborative national research strategy

• Build on and update NCSI evidence review

• Must not forget social consequences too

The impact of cancer and its treatment

•

• Patient Reported Outcome Measures (PROMS) give insight:

• the quality of life for those living with and beyond cancer from their experiences and point of view

• the impact of cancer and treatments on ability to lead meaningful lives.

What did people tell us?

– 1 year post diagnosis nearly half feared recurrence and almost a third were afraid of dying.

– 38% of prostate cancer survivors reported urinary leakage and 58% reported impotence.

– One in five colorectal survivors reported difficulty in bowel control.

– QOL is closely associated with disease status and presence of other long term conditions.

– Almost a third reported doing no physical activity and around a fifth did the weekly recommended CMO physical activity i.e. 30 mins x 5.

– Increased physical activity associated with better QOL.

Building capacity

• Collaboration key to avoid isolation

• Need for fellowships and career structure [still] to build critical mass and attract researchers to the field

Challenges for cancer survivorship research from NCSI

• Comprehensive and representative data on the actual problems of survivors

• More accurate case definitions of survivors

• Long-term surveillance of cancer survivors across major dimensions of optimal survivorship both health and functional outcomes

• Development of validated risk factors for optimal survivorship, understanding how they interact and approaches that can be modify them

• Better understanding and effective approaches to smoothly reintegrate the cancer survivor into society

Recommendations for Ireland?

• Holistic and collaborative approach

• Balance:

– Population data – prevalence and Health Service – Develop and evaluate interventions– Patient data – PROMS, experience & social needs– Risk stratification / predictive models to inform

assessment and care planning– Build research capacity and networks

• Data is key! NCIN!

Acknowledgements

• Macmillan Cancer Support:

• Hannah McConnell – Data Lead, Intelligence and Research

• Steve Hindle – Cancer Survivorship Programme Lead

• Lesley Smith – Consequences of Treatment Programme Manager

• Julie Flynn – Senior Programme Manager – Routes from Diagnosis

• Helen Ross – Cancer Population Evidence Programme Lead

Thank you!

jim@drakesyard.co.uk