TYA cancer care in the North Thames Network

Rachael Hough

Co-Chair of the North Thames TYA Cancer Network

Coordinating Group

25th July 2013

TYA Cancer: Tumour Types

100

0-79 years

% o

f al

l can

cers

by

tiss

ue

of

ori

gin

Lymphomas Carcinomas Germ cell tumours

CNS tumours Leukaemia Melanoma

Bone tumour Soft tissue sarcomas Other cancers

0

10

20

30

40

50

60

70

80

90

13-24 years

Tumour % of all cancers

13-24 0-79

Lymphoma 22.1 4.1

Carcinomas 16.7 78.7

Germ cell tumours 14.4 0.9

CNS tumours 14.2 3.2

Leukaemia 10.4 2.5

Melanoma 8.9 3

Bone tumour 6.2 0.2

Soft tissue sarcoma 4.6 1

Other cancers 2.5 6.4

TYA Cancer: Inferior Survival

Overview of five-year survival by diagnosis and age for patients diagnosed in the UK 2001-2005

Improvement in 5-Year Survival, Invasive Cancer, 1975 to 1997, USA

Age at Diagnosis (Years)

25 0 5 10 15 20 30 35 40 45 50 55 60 65 70 75 80 85 0%

All Age Average = 1.46% / yr

Average Annual

% Change

0.5%

1.0%

1.5%

2.0%

1.59%

1.72% 1.72%

1.12%

1.35%

1.60%

1.90%

2.22%

2.38%

1.99%

1.59%

0.91% Age 85+

0.91%

0.48%

0% -0.27%

0.22%

0.51%

A. Bleyer, SEER data

TYA Cancer: Poor recruitment to clinical trials

65.2

54.6

42.7

29.8

12.3 8.3 7.5 6.7 8.0 7.8 8.5 7.3

0.0

10.0

20.0

30.0

40.0

50.0

60.0

70.0

0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59

Pro

port

ion o

f pati

ents

recru

ited

Age at accrual

Proportion of children and young adults entered into selected trials 2005- 2010, England only

Improving survival in UK ALL patients by collaboration between NCRI Paediatric and Adult

Working Groups and change in national treatment strategy

ALL2003 (Follow-up to Oct 2011)

EVENT FREE SURVIVAL BY AGE GROUP

0 1 2 3 4 5 6

0

25

50

75

100

PE

RC

EN

T

TIME IN YEARS

89%

82%

74%

<10 10-15 16+

No. Patients

No. Events

Obs./ Exp.

<10 2288 187 0·8 10-15 611 85 1·4

16+ 229 46 2·5

2P < 0·00001

49% EFS at 5 years in 15-17

year olds

74% EFS at 6 years in 16-24

year olds

Recruitment to clinical trials increased

Proportion of newly diagnosed ALL patients entering UKALL2003 and UKALLXII,

January 1st 2006- 31st December 2008

Proportion of newly diagnosed ALL patients entering ALL97, UKALL2003, UKALLXII

January 1st 1997-December 31st 2006

Courtesy L Fern and J Whelan

I feel that UCH do not adequately cater for

teenagers/young adults with cancer but I am glad to see that this is beginning to be

addressed. (21 year old female)

Even if they don’t talk to

each other – just knowing

that people here are of

the same age and in the

same situation is a

comfort.

(Mum of 17 year old

male)

I really liked the fact that I

was with people who were

my own age and who

looked like me. It made me

feel less self conscious.

(14 year old female)

The care and treatment I received was fantastic on

the adult ward but I sometimes found it

alienating and at times distressing to be the only

young person there. (20 year old male)

The age range is about right but sometimes the 13 year olds get on my nerves like my little

brother! ( 19 year old male)

The nurses get how to talk to you

here… ( 19 year old male)

I had treatment on the teenage unit and on an adult ward. The major difference for me was that I didn’t have anyone to talk to who was my age. That

definitely made being in hospital worse for me. (24 year old male)

Being with people of a similar age is important to me

0.00%

5.00%

10.00%

15.00%

20.00%

25.00%

30.00%

35.00%

40.00%

45.00%

50.00%

Strongly

disagree

Disagree Neither

disagree nor

agree

Agree Strongly

agree

All

13-19

20-24

It’s a good thing to have males and females mixing – it’s much more like real life and more like the environments

that they mix in like school and university.

(Mum of 19 year old male)

I think it must

be strange for a

girl if they’re the

only one in a

bay of boys. I

don’t know

really…

(18 year old

male)

It doesn’t bother me if I’m in a bay with boys

and girls – that’s better than being with a load

of small kids or old people.

(15 year old girl)

I think it’s more of a

problem for the girls than

the boys to be honest – it

doesn’t bother me at all.

(19 year old male)

It’s more important for me to be with people

my own age (14 year old girl)

Just knowing that people are here and in the same situation is a comfort – it doesn’t matter what gender

they are. (Mum of 19 year old male)

Being with people of the same sex is important to me

0.00%

5.00%

10.00%

15.00%

20.00%

25.00%

30.00%

35.00%

40.00%

45.00%

Strongly

disagree

Disagree Neither

disagree nor

agree

Agree Strongly

agree

All

13-19

20-24

Being able to stay overnight is very important – young people don’t want to ask the nurses for help with little

things like getting a drink so we can do it for them if

we’re there.

(Mum of 17 year old male)

I like the fact that my mum or my sister can stay overnight – I think I’d

be lonely otherwise… (15 year old girl)

I just like knowing that there’s someone here for

me all the time. Sometimes I want to talk at night but

the nurses are busy. (17 year old female)

Sometimes it’s lonely when

visiting time is over and

your friends or family have

gone. I would have liked it if

my girlfriend could have

stayed with me on the ward.

(22 year old male)

You don’t realise how lucky you are until you have to

go somewhere else.

(Dad of 19 year old male)

My son doesn’t always want me to stay by the bed – it’s important that we have our own space. The thing is, he does want me around though so it’s good to have somewhere to stay so that I can be close

by if he needs me. (dad of 18 year old male)

It’s much better when I have

someone staying with me – I don’t

get so bored. (14 year old girl)

It is important for me that someone is able to stay overnight

with me if I want/need them to

0.00%

10.00%

20.00%

30.00%

40.00%

50.00%

60.00%

Strongly

disagree

Disagree Neither

disagree nor

agree

Agree Strongly agree

All

13-19

20-24

The day room was one of the

most important things about my

experience at the hospital. It

helped me mix with other

people and provided a really

good distraction from the chemo

and effects.

(19 year old male)

We’d be in bed all day if we didn’t have the dayroom!

(19 year old male)

The dayroom was a great getaway…

(17 year old female)

It’s really good to have somewhere to go with your friends or family rather than sitting in

your bed when they come and visit (15 year old female)

You don’t have to worry about people staring or thinking that your child

is strange because everyone is in a similar

situation – they’re attached to pumps, have no hair etc.

(Mum of 17 year old male)

The activity

co-ordinators are

really important,

especially for the

younger patients.

(19 year old male)

Having access to a day room/social area where I can go with my

visitors or patients of a similar age is important to me

0.00%

10.00%

20.00%

30.00%

40.00%

50.00%

60.00%

70.00%

Strongly

disagree

Disagree Neither

disagree nor

agree

Agree Strongly agree

All

13-19

20-24

How do we make change? National guidance

Improving Outcomes Guidance

(published in August 2005)

NCAT TYA measures

(published in July 2011)

Key recommendations from the IOG

• TYACNCG

• Place of care

• All patients aged 16-18 years should be referred to the TYA PTC

• All patients aged 19-24 years should be offered choice between the TYA PTC or a local designated hospital

• Robust arrangements for planned transition between children and young people’s services and between young people’s and adult services.

• Discussion at TYA MDT

• All patients aged 13/16-24 years inclusive should be discussed at both a site-specific MDT meeting and a TYA MDT meeting.

• The TYA MDT should coordinate treatment, psychosocial care and peer contact/support for young people wherever they are treated

• BUT: referrals should not delay the start of urgent cancer treatment.

North Thames TYA Cancer Network

Total population = 6.7 million

Patients aged 16-24 years

All tumour types

Paediatricians and adult physicians

No funding

Essex

NWL

London

Cancer

London Cancer

Alliance

Mount

Vernon

1

5

6

7

8a

9

8b

10

12

13b

13a

11

14

16

15

17 18

20

19

2

3 21

22

4 23

24

PTC

POSCU

TYA DH

Network TYA Designated NHS Trust(s)

London Cancer ICS

Barking Havering and Redbridge University NHS Trust

Barts Health NHS Trust (for Barts and the Royal London)

Royal Free Hampstead Hospital NHS Trust (Skin Cancer only)

Whittington Health NHS Trust (shared care only)

London Cancer Alliance ICS

(NWL part)

Chelsea & Westminster Hospital NHS Trust (HIV and skin only)

Imperial Healthcare Hospitals NHS Trust

Essex Cancer Network

Southend University Hospital NHS Trust

Colchester Hospital University NHS Trust

Mid Essex Hospitals Trust

Basildon and Thurrock University Hospital NHS Trust

Mount Vernon CN Mount Vernon Cancer Centre

East & North Hertfordshire NHS Trust (Lister hospital)

TYA designated Trusts

TYACNCG Objectives 2013-14

Network Governance • Implementing robust TYA referral pathways Patient Experience • Development of patient information folder to be send to all patients discussed at

the TYA MDT • Conducting network-wide patient information survey Education • Standardisation of nursing education Survivorship • Auditing current Late Effects Service for TYA patients • Development and implementation of action plan for service improvements Research & Early Diagnosis • Defining and improving the clinical trials portfolio • Development of information packs for GPS

Thank you