Cancer survivorship ......meeting the needs of people following cancer treatment

Dr Karen RobertsMacmillan Nurse Consultant / Reader

North of England Cancer Network Survivorship LeadNorthern Gynaecological Oncology Centre

Northumbria University

• To consider today:– A ‘helicopter’ view of life after cancer

and a national update– What people want (and need) following

cancer treatment– Projects across the North of England

Cancer Network– The key messages about survivorship

and the implications for future work– Discuss how to move forward

Please get involved

NECN Survivorship steering

groupStrategy,

commissioning and

implementation plan

Education needs

Pilots eg. HOPE /

MBCT-Ca

Influencing guidelines in all

site specific groups

Pelvic project eg. Pilot implementation

of GI treatment algorithms

Do we really understand survivorship?

2 million cancer survivors

1/4 to 1/5 of people (up to 500,000 people) currently

experience consequences of cancer and its

treatment that have an adverse impact on their

quality of their life (Armes et al, 2009)

This number is expected to increase to

600,000 by 2020 (Maddams et al, 2009)

Endocrine

Cognitive problems

Cardiac dysfunction

Renal dysfunction

Infertility & sexuality

Bowel/bladder problems

Second tumours

Emotional problems

Gill Levitt 2008

Public health problem?• The impact of adverse effects increasing - more

cancer patients treated earlier & living longer• Late effects contribute to cancer survivors

having worse health than those without a ca diagnosis, similar to those with long term conditions

• A spectrum - low grade to catastrophic but not routinely recognised, documented or managed

The risks of surviving are considerable

• Survivors of childhood cancers have a >19 fold risk of developing a second malignancy (Dickerman 2007)

• Survivors of cancer are at greater risk of second malignancies, cardiovascular disease, diabetes, osteoporosis, and other chronic conditions (Demark-Wahnefried et al 2005)

Particularly if you do not change your lifestyle….

• Worse overall & disease free survival associated with obesity, poor diet and inactivity (Holmes et al 2005, Haydon et al 2006, Meyerhardt et al 2007)

• Continuing to smoke is associated with poorer QoL (Garces et al 2004), worse treatment toxicity (Wells et al 2004) and poorer survival (Fox et al 2004)

Paul ValeryFrench critic & poet (1871 - 1945)

“The trouble with our times is that the future is not what

it used to be”

• Overall, 63% of males and 54% of females who are living with a diagnosis of cancer are aged 65 and over (ISD 2008)

• As many as 1 in 6 adult patients over 65 in a GP practice are survivors of cancer (Grunfeld 2005)

• A hugely diverse group• Cancer may not be the

biggest problem

A new generation of cancer survivors

“For a growing number of people, cancer is no longer immediately

life threatening…. an increasingly unpredictable illness trajectory where little is

known about the health outcomes of individuals over and above their chances of surviving the disease”

(J Corner EJON 2008)

Why don’t we know?• Medical focus on prognosis, survival, objective

markers of recurrence is hard to shift• Incomplete reporting and inconsistent

measurement of long term side effects• Treatments are changing, long term side effects are

unknown • Context of care is changing - outpatient ‘self-care’ • ‘End of treatment’ / ‘end of life’ much less clear cut• Evidence we have is limited to the easily

measurable and the trial minority

Survivorship and the new landscape for health and social care

• Wellness not illness– Health promotion and education– Managing transitions

• Late effects surveillance– GP treatment summary and survivorship care plans– Enabling self-management

• Key worker role - may change from ‘specialist’ to ‘generalist’• Involving patients and carers – our greatest untapped

resource

CCaT Consequences of Cancer Treatment Collaborative

• The Consequences of Cancer Treatment collaborative (CCaT) was created in 2009 by Macmillan Cancer Support to influence and improve care for cancer survivors suffering side effects of treatment

• We are 12 people from England and Scotland, all research-active nurses or allied health professionals

• As "hybrid creatures" we bridge gaps between research and practice, by speaking the languages of clinicians, academics, educationalists, service improvers and policy makers.

• www.cancerconsequences.org

17

Consequences of Cancer Treatment

Collaborative

Conducting

meaningful

and rigorous

research

Raising

awareness

and delivering

education

Influencing

policy and

changing the

culture of care

Developing

sustainable

services /

systems of

care

10 Top Tips for Cancer Survivors- creating the activated patient

The ‘3 P’s’ of cancer survivorship care

Conceptually, the care delivery falls into 3 major domains:

• Palliation of ongoing symptoms.• Prevention of late effects of cancer

treatment.• Health Promotion to maximise future

wellbeing. (Ganz,P.A. 2011)

• Fear of recurrence is the greatest concern in cancer survivors (Humphris & Ozakinci 2006)

• 5 out of 6 top unmet needs relate to fears for the future (Armes et al 2007)

Greater attention to known unmet needs

Mindfulness based cognitive therapy for cancer (MBCT-Ca) project

• Part of the NCSI test community. • Partnership working with South of Tyne PCT’s,

acute trusts, mental health trust and cancer network.

• Development of a group intervention for cancer survivors which is skills based.

• Community based – normalising adaptation and integration to a new normal.

• Building upon strengths and developing resilience in the face of adversity.

Public images of survival can be inspirational

“Live strong is exactly I guess what it says. It’s one thing to live, but it’s another thing to live strong, to attack the day and attack your life with a whole new attitude. This was a gift for

me. I guess before the illness I just lived. Now, after the illness, I live strong….

I’m Lance Armstrong, and I’m a cancer survivor”

LiveStrong.org / online survivorship care plan

“I need to know that this is my body. And I need to know everything that is happening to my body. But most of all I need to know that you know that within my body there is

me”

The need to recognise the individual

Michele Angelo Petrone, Artist

Diagnosed with Hodgkins lymphoma aged 30, died 2007 aged 43

The Questions • What are the issues or problems to be tackled ?• How do we screen / assess?• What interventions work!• What testing should be done in NECN?• How will we know if we have made a difference ?• What further research is needed ?• How does this work link to the management of other

long term conditions?• What may the work plan look like for our network?

Acknowledgements

Prof Jane Maher, Dr Diana Greenfield, Dr Isabel White, Dr Mary Wells and my colleagues and friends from CCaT.

Dr Sanjay Rao, Consultant Liasion Psychiatrist