ࡱ> F( / 00DArialngsRomanll\ЛT0DGaramondRomanll\ЛT0 DTimes New Romanll\ЛT00DWingdingsRomanll\ЛT0 A .  @n?" dd@  @@`` phu  !"#$&,,,,,,HH**>>    () 5 HG,,// // 0AA@8 Q!Rʚ;ʚ;g4bdbdܛ T0ppp@ <4dddd8!0l8Л 0___PPT10 ppL___PPT9.&?  %`>BHow should we look after young people with leukaemia and lymphoma?CC6 Yorkshire and Humber and East Coast Cancer Networks ExperienceWhich Treatment?Which treatment protocol should be used? Who should be responsible for the treatment? Where should the treatment be delivered? Who should make these decisions?Why is this difficult?There is often a lack of good evidence for which treatment is best The protocols used to treat children and adults may be very different This a rewarding group of patients to care for Why do this group of patients need special treatment? 8Treatment regimen differences: Diffuse large B cell NHL99$@Adult Early disease CHOP x3 + IFRT Advanced disease CHOPR x6-8 ZZZZ ZZ  Paediatric Early disease COPAD x2 Advanced disease COP + IT chemo COPAD x2 + IT chemo Then CYM x2 + IT chemo OR CYVE x2 + IT chemo + 4 months maintenance chemo  ZZ ZZ(ZFZ  (  F vTreatment regimen differences: Classical Hodgkin s disease<<$LAdult Early disease: ABVD x3 +/- IFRT Advanced disease: ABVD x6-8 +/- IFRT VZZ!ZZ!ZM Paediatric Early disease: OEPA/OPPA x2 +/- IFRT Advanced disease: OEPA/OPPA x2 + COPP x2 +/- IFRT or OEPA/OPPA x2 + COPP x2 +/- IFRT VZZZ ZZ!ZWhere did we start?$Assume that: Co-operation will improve patient care Everyone wants to act in the best interests of the patient The Children in Hospital NSF and the IOG for children and young people cannot be ignored So the Cancer Network Haemato-oncology Group have to engage with thisBZZFZF)  Where did we start?$Discussion of the need to address this at a Network Haemato-oncology Group Meeting A working group was set up with open membership It was agreed that the working group would produce a discussion document with proposals for care pathways4 Membership of the working group (Paediatric haematologists Paediadtric oncologists Adult haematologists Adult oncologists TYA unit staff Haematology nurse specialists  b  !Production of Discussion Document""(Summary of the relevant points from: Children in Hospital NSF (2002) Draft IOG for Children and Young People with Cancer Outline underpinning principles for the suggested care pathways Suggested care pathways 6%UY%UYChildren in Hospital NSF  Lays out a benchmark for care Applies to everyone under the age of 19 years States that children and young people: are vulnerable individuals, yet have their own rights have a right to education, recreation and full information*tZqZtq Children in Hospital NSF Nshould be treated in a suitable environment by professionals who have: an understanding around issues of consent offer a choice in their care can offer appropriate support. should be treated by multidisciplinary teams: with knowledge of the issues of child protection using evidence based practice providing co-ordination of services.TGf.tGf.t =Improving Outcomes for Children and Young People with Cancer ><$(Underlying principles are that services must be: Age appropriate Safe Effective Deliver care to patient as near to patient s home as possible *1] =Improving Outcomes for Children and Young People with Cancer ><$(nAge appropriate facilities <19 years care should be delivered in age appropriate facilities e"19 years should have unhindered access to age appropriate facilities and support as needed Principle treatment centres should be established Treatment based on evidence of best outcome Appropriate care pathways should be developed Patients should be entered into trials if eligible National cancer registry for 15-24 year olds to be established P PPPA"[    F    &    .      =Improving Outcomes for Children and Young People with Cancer ><$(Psychosocial support Advice & support of social worker Support from psychologists Access to an age appropriate MDT Peer support Sibling & family support Long term follow up Palliative care & Bereavement support Child Protection for d"16 year oldsLZ Z]ZO -Principles underlying suggested Care Pathways..(It seemed unlikely that IOG would be prescriptive about how service is provided Guidance will have to be followed as it will be subject to Peer Review Collaboration between TYA MDT & adult & paediatric haematology services is essential Patient s care should be at centre of Service configuration Cancer Network based service should be developed to deliver optimum careqZq-Principles underlying suggested Care Pathways..(Developing robust referral routes is the starting point for any service There may be conflicting opinions regarding individual patient s management Suggestions have been made on how to resolve this Efficacy of the Care Pathways will be evaluated 62121jResolution of conflict regarding patients management66(Multidisciplinary meeting should be arranged with all relevant staff Decision should be based on: Biology of the disease Available evidence Possibility of trial entry Expertise available to manage the patient&boboSuggested Care PathwaysAge 16 years and under Place of Care: treated as children and referred to St James s University Hospital. Treatment Team: Paediatric haematologist and paediatric oncology MDT and TYA Service as appropriate. Protocol: Paediatric.L%DU  Suggested Care PathwayAge: 17  18 years Place of Care: in patient - the Teenage Cancer Unit, SJUH. outpatient - shared care arrangement with chemotherapy and supportive care delivered locally or in the Teenage Cancer Unit. Treatment Team: The patients will be reviewed at a MDT meeting in Leeds. Decided after discussion with the referring Consultant, paediatric haematologist and TYA Service. Protocol: Jointly discussed between referring consultant and paediatric haematologist/oncologist. Chosen considering the biology of the disease.ZZZZZ ZZ    Suggested Care PathwayAge: 19  25 years. Place of Care: Adult Haematology Unit, usually Treatment Team: Adult haemato-oncology with psycho-social support from the TYA Service. Protocol: For most patients adult protocols For cancers occurring most commonly in the paediatric age group, management should be jointly discussed between adult haemato-oncologist and paediatric haematologist/oncologist. G ,Y5Facilitation of CarehEach young person will have a designated  key worker a named Consultant from his/her locality a named Consultant from TYA unit or adult haemato-oncologist in Leeds a named CNS from his/her locality & TYA unit relevant staff from his/her locality & Leeds present MDMs where his/her care is being discussed  5,w)$Acceptance of proposed Care Pathways%%(Working group revised discussion document Numbers of patients who would have been affected in 2004 were added Document was circulated to all members of Networks Haemato-oncology Group Document was discussed at full Group meeting with members of TYA team W Where Next?RDocument to go to: Trust management Cancer Networks Boards (& so inform PCTs) Network Paediatric Oncology Group Post the document on YCN Website Launch Care Pathways `_6_6I]Launch of Care PathwaysLaunch pack Leaflets about TYA unit Copy of policy Who to contact Circulate packs to Consultant haematologists Haematology CNSs Paediatric Cancer Leads L 6D 6D{Remaining workEvaluate Care Pathways Modify Care Pathways in the light of experience Develop guidelines to facilitate transition of care for children and younger adolescents from paediatric to adult services as they become adults  ConclusionsThis something that we have to engage with Optimum patient care should be at the centre of service arrangements A collaborative approach should facilitate optimum patient care Patients numbers are relatively small ConclusionsPatient management should be via a multi- disciplinary multi-professional approach There is a long way to go before we can know which treatment is best Trial entry is the only way to answer this question  Working PartyE Sue Morgan Sally Burrell Di Gilson Pete Hillmen Sally Kinsey FFP      4 Ian Lewis Lisa Newton Russell Patmore Julie Watson55.      0` 3` ff>>\fg` J*T333` QYmx~3ft` \ғhEy`` cb^DDf`Y˵W` sg7xGr` K%ޯd{mG/` 33f>?" dd@,?nFd@    @ `  n?" dd@   @@``PR    @ ` `<p>> (    6LD #" `b `  X*   6dI #" `` `  Z* xT ~  "~\ {  "{  c BB CDEFd @ bb   H   T W6Vw}\gFQ6<1++11 1L b6xQrq 6\}N   - c    0 A Q g     S    6N KawF bFy0 a*ly7lE;uz  B | a F 0 ! 1 < B < & l L 0  @`"T   c |BC+DEFyd @ ==gL6cI}\eA& w6m!W<! &<W!r6W}F6\}>68QNlX^XH8+Sgg|@`"Jo 5 J   B! 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