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TYA Cancer Care in the North Thames Network

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Presentation by North Thames Teenager and Young Adults Cancer Network Coordinating Group Co-Chair Rachael Hough at the London Cancer Children, Teenager and Young Adults Study Day, held on 25 July 2013.

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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 %ofallcancersbytissueoforigin 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) 250 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 Proportionofpatientsrecruited 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 PERCENT TIME IN YEARS 89% 82% 74% <10 10-15 16+ No. Patients No. Events Obs./ Exp. <10 2288 187 0揃8 10-15 611 85 1揃4 16+ 229 46 2揃5 2P < 0揃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 dont 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 didnt 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
Its a good thing to have males and females mixing its 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 theyre the only one in a bay of boys. I dont know really (18 year old male) It doesnt bother me if Im in a bay with boys and girls thats better than being with a load of small kids or old people. (15 year old girl) I think its more of a problem for the girls than the boys to be honest it doesnt bother me at all. (19 year old male) Its 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 doesnt 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 dont want to ask the nurses for help with little things like getting a drink so we can do it for them if were there. (Mum of 17 year old male) I like the fact that my mum or my sister can stay overnight I think Id be lonely otherwise (15 year old girl) I just like knowing that theres someone here for me all the time. Sometimes I want to talk at night but the nurses are busy. (17 year old female) Sometimes its 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 dont realise how lucky you are until you have to go somewhere else. (Dad of 19 year old male) My son doesnt always want me to stay by the bed its important that we have our own space. The thing is, he does want me around though so its good to have somewhere to stay so that I can be close by if he needs me. (dad of 18 year old male) Its much better when I have someone staying with me I dont 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) Wed be in bed all day if we didnt have the dayroom! (19 year old male) The dayroom was a great getaway (17 year old female) Its 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 dont have to worry about people staring or thinking that your child is strange because everyone is in a similar situation theyre 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 peoples services and between young peoples 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 2 321 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
TYA Cancer Care in the North Thames Network
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
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TYA Cancer Care in the North Thames Network

  • 1. TYA cancer care in the North Thames Network Rachael Hough Co-Chair of the North Thames TYA Cancer Network Coordinating Group 25th July 2013
  • 2. TYA Cancer: Tumour Types 100 0-79 years %ofallcancersbytissueoforigin 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
  • 3. TYA Cancer: Inferior Survival Overview of five-year survival by diagnosis and age for patients diagnosed in the UK 2001-2005
  • 4. Improvement in 5-Year Survival, Invasive Cancer, 1975 to 1997, USA Age at Diagnosis (Years) 250 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
  • 5. 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 Proportionofpatientsrecruited Age at accrual Proportion of children and young adults entered into selected trials 2005- 2010, England only
  • 6. 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 PERCENT TIME IN YEARS 89% 82% 74% <10 10-15 16+ No. Patients No. Events Obs./ Exp. <10 2288 187 0揃8 10-15 611 85 1揃4 16+ 229 46 2揃5 2P < 0揃00001 49% EFS at 5 years in 15-17 year olds 74% EFS at 6 years in 16-24 year olds
  • 7. 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
  • 8. 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 dont 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 didnt 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
  • 9. Its a good thing to have males and females mixing its 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 theyre the only one in a bay of boys. I dont know really (18 year old male) It doesnt bother me if Im in a bay with boys and girls thats better than being with a load of small kids or old people. (15 year old girl) I think its more of a problem for the girls than the boys to be honest it doesnt bother me at all. (19 year old male) Its 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 doesnt 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
  • 10. Being able to stay overnight is very important young people dont want to ask the nurses for help with little things like getting a drink so we can do it for them if were there. (Mum of 17 year old male) I like the fact that my mum or my sister can stay overnight I think Id be lonely otherwise (15 year old girl) I just like knowing that theres someone here for me all the time. Sometimes I want to talk at night but the nurses are busy. (17 year old female) Sometimes its 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 dont realise how lucky you are until you have to go somewhere else. (Dad of 19 year old male) My son doesnt always want me to stay by the bed its important that we have our own space. The thing is, he does want me around though so its good to have somewhere to stay so that I can be close by if he needs me. (dad of 18 year old male) Its much better when I have someone staying with me I dont 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
  • 11. 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) Wed be in bed all day if we didnt have the dayroom! (19 year old male) The dayroom was a great getaway (17 year old female) Its 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 dont have to worry about people staring or thinking that your child is strange because everyone is in a similar situation theyre 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
  • 12. How do we make change? National guidance Improving Outcomes Guidance (published in August 2005) NCAT TYA measures (published in July 2011)
  • 13. 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 peoples services and between young peoples 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.
  • 14. 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 2 321 22 4 23 24 PTC POSCU TYA DH
  • 15. 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
  • 17. 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