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Survivorship Update February 2012. Steve Hindle Macmillan Survivorship Programme Lead. National Cancer Survivorship Initiative (NCSI) Vision. - PowerPoint PPT Presentation
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National Cancer Survivorship Initiative
Survivorship Update February 2012
Steve HindleMacmillan Survivorship
Programme Lead
National Cancer Survivorship Initiative
National Cancer Survivorship Initiative (NCSI) Vision
Theāļæ½ļæ½visionļæ½ļæ½ofļæ½theāļæ½ļæ½NCSIāļæ½ļæ½isļæ½ļæ½thatļæ½ļæ½byāļæ½ļæ½2012,ļæ½ļæ½thoseāļæ½ļæ½livingāļæ½ļæ½withļæ½ļæ½andļæ½ļæ½beāyāondļæ½ļæ½canceārāļæ½ļæ½arāeāļæ½ļæ½supporāteādļæ½ļæ½toļæ½liveāļæ½asļæ½heāalthyāļæ½andļæ½activeāļæ½aļæ½lifeāļæ½asļæ½possibleāļæ½ļæ½forāļæ½ļæ½asļæ½ļæ½longāļæ½ļæ½asļæ½ļæ½possibleā.
National Cancer Survivorship Initiative
What do we know
ā¢ Evideānceāļæ½ofļæ½whatļæ½theāļæ½prāobleāmsļæ½arāeāā¢ Howļæ½manyāļæ½canceārāļæ½surāvivorās,ļæ½andļæ½wheārāeāļæ½theāyāļæ½arāeāļæ½
inļæ½theāirāļæ½eāxpeārāieānceāļæ½ofļæ½canceārāā¢ PROMsļæ½willļæ½showļæ½howļæ½manyāļæ½peāopleāļæ½haveāļæ½whatļæ½
prāobleāmsļæ½(Marāchļæ½2012)ā¢ Deāsigāneādļæ½andļæ½teāstingāļæ½eāvideānceā-baseādļæ½
sustainableāļæ½seārāviceāsā¢ Economicļæ½eāvideānceāā¢ Mappeādļæ½toļæ½NHSļæ½Outcomeāsļæ½Frāameāworāk
National Cancer Survivorship Initiative
Enga
gem
ent w
ith c
linic
ians
&
com
mis
sion
ers
2009 2015 Time
Investigate Innovate
Implement
We are here
NCSI: where we are in the initiative cycle
National Cancer Survivorship Initiative
Emerging principles
ā¢ Peārāsonaliseādļæ½pathwayāsļæ½ofļæ½carāeā,ļæ½rāatheārāļæ½thanļæ½oneāļæ½sizeāļæ½fitsļæ½all,ļæ½usingāļæ½rāiskļæ½strāatificationļæ½apprāoach
ā¢ Manyāļæ½peāopleāļæ½canļæ½beāļæ½eāncourāagāeādļæ½toļæ½seālfļæ½managāeāļæ½withļæ½supporātļæ½,ļæ½withļæ½rāapidļæ½acceāssļæ½toļæ½prāofeāssionalsļæ½wheānļæ½neāeādeād
ļæ½ā¢ Iāmporātanceāļæ½ofļæ½holisticļæ½asseāssmeāntļæ½leāadingāļæ½toļæ½carāeāļæ½planļæ½toļæ½meāeātļæ½
theāļæ½individualāsļæ½peārāsonalļæ½cirācumstanceās
ā¢ Iānforāmationļæ½prāovisionļæ½toļæ½meāeātļæ½individualļæ½neāeāds,ļæ½timeālyā,ļæ½prāomotingāļæ½confideānceāļæ½andļæ½choiceā
National Cancer Survivorship Initiative
Key messagesā¢ Curārāeāntļæ½seārāviceāsļæ½arāeāļæ½notļæ½meāeātingāļæ½patieāntsļæ½neāeāds,ļæ½andļæ½willļæ½notļæ½beāļæ½ableāļæ½toļæ½
copeāļæ½withļæ½futurāeāļæ½numbeārās.
ā¢ Thrāougāhļæ½inveāstmeāntļæ½inļæ½neāwļæ½modeālsļæ½ofļæ½afteārācarāeāļæ½forāļæ½canceārāļæ½surāvivorās,ļæ½theārāeāļæ½arāeāļæ½opporātunitieāsļæ½toļæ½imprāoveāļæ½qualityāļæ½andļæ½eāfficieāncyāļæ½ofļæ½seārāviceās.ļæ½ļæ½
ā¢ Asseāssmeāntļæ½andļæ½carāeāļæ½planningāļæ½willļæ½peārāsonaliseāļæ½carāeāļæ½andļæ½canļæ½makeāļæ½sigānificantļæ½diffeārāeānceāsļæ½toļæ½patieāntļæ½qualityāļæ½ofļæ½lifeā.
ā¢ Supporāteādļæ½seālfļæ½managāeāmeāntļæ½canļæ½imprāoveāļæ½theāļæ½qualityāļæ½ofļæ½lifeāļæ½forāļæ½surāvivorās
ā¢ Goodļæ½surāvivorāshipļæ½carāeāļæ½rāeāquirāeāsļæ½timeālyāļæ½communicationļæ½acrāossļæ½heāalthļæ½andļæ½socialļæ½carāeāļæ½boundarāieās
National Cancer Survivorship Initiative
3 Levels of care and support
National Cancer Survivorship Initiative
NCSI Prototypes
NHSļæ½Iāmprāoveāmeāntļæ½leāadingāļæ½teāstingāļæ½ofļæ½rāiskļæ½strāatifieādļæ½pathwayāsļæ½inļæ½8ļæ½prāototyāpeāļæ½communitieāsļæ½acrāossļæ½15ļæ½prāojeāctsļæ½inļæ½Brāeāast,ļæ½Colorāeāctal,ļæ½Lungā,ļæ½Prāostateā.
Teāstingāļæ½eānableārāsļæ½ofļæ½rāeāmoteāļæ½monitorāingāļæ½andļæ½carāeāļæ½coorādination.
Iāpsosļæ½MORIāļæ½baseālineāļæ½rāeāporātļæ½outļæ½nowļæ½onļæ½NHSļæ½Iāmprāoveāmeāntļæ½weābsiteāFinalļæ½rāeāporātļæ½Marāchļæ½2012.
NHS Improvement - CancerEffective follow up: Testingrisk stratified pathwaysMay 2011
National Cancer Survivorship Initiative
āIāļæ½neāeādļæ½toļæ½knowļæ½myāļæ½patieāntāsļæ½trāeāatmeāntļæ½andļæ½carāeāļæ½isļæ½safeāā
Care coordination Remote surveillance
āIāļæ½wantļæ½toļæ½beāļæ½trāeāateādļæ½asļæ½aļæ½peārāsonļæ½andļæ½knowļæ½whoļæ½toļæ½contactļæ½wheānļæ½Iāļæ½neāeādļæ½heālpā
National Cancer Survivorship Initiative
Assessment and care planning
āNoļæ½oneāļæ½askeādļæ½meāļæ½whatļæ½Iāļæ½thougāhtļæ½wasļæ½imporātantāļæ½ļæ½
75% of patients did not know if they had a care plan Picker 2009
ā¢ Piloteādļæ½asseāssmeāntļæ½andļæ½carāeāļæ½planningāļæ½2009/10ā¢ Treatment summary teāsteādļæ½-ļæ½availableāļæ½toļæ½impleāmeāntā¢ Cancer Care Review teāmplateāsļæ½availableāā¢ Teāstingāļæ½eāleāctrāonicļæ½solutionsļæ½toļæ½asseāssmeāntļæ½andļæ½carāeāļæ½
planningāā¢ Asseāssmeāntļæ½andļæ½Carāeāļæ½planningāļæ½nowļæ½aļæ½Peāeārāļæ½Reāvieāwļæ½
meāasurāeā
National Cancer Survivorship Initiative
Self management supportāIāļæ½didnātļæ½knowļæ½whatļæ½Iāļæ½couldļæ½doļæ½toļæ½heālpļæ½myāseālfā1 in 3 patients reported 5 moderate / severe unmet needs at end of treatment - for 60% this had not improved 6 months after treatment, Armes et al 2009
Iānvolveāsļæ½apprāoacheāsļæ½whichļæ½eāmpoweārāļæ½andļæ½activateāļæ½peāopleāļæ½soļæ½thatļæ½theāyāļæ½feāeālļæ½confideāntļæ½aboutļæ½managāingāļæ½theāirāļæ½conditionļæ½andļæ½arāeāļæ½morāeāļæ½likeālyāļæ½toļæ½changāeā/alteārāļæ½theāirāļæ½beāhaviourā.
ā¢āactivatingāāļæ½ļæ½peāopleāļæ½soļæ½thatļæ½theāyāļæ½canļæ½useāļæ½inforāmationļæ½andļæ½supporātļæ½toļæ½managāeāļæ½theāirāļæ½heāalthļæ½andļæ½alteārāļæ½beāhaviourās.
ā¢Reā/skill/trāainļæ½cliniciansļæ½toļæ½takeāļæ½aļæ½supporātiveāļæ½āpoweārāļæ½sharāingāāļæ½rāatheārāļæ½thanļæ½aļæ½āpoweārāļæ½holdingāāļæ½apprāoach.
ā¢Useāļæ½seārāviceāļæ½imprāoveāmeāntļæ½eāxpeārātiseāļæ½toļæ½makeāļæ½changāeās.Teāstingāļæ½atļæ½Southamptonļæ½Univeārāsityāļæ½Hospitalļæ½Trāust.
National Cancer Survivorship Initiative
Health and Well Being Clinics - 15 pilots 2010/11
ā¢ Halfļæ½dayāļæ½eāveāntļæ½toļæ½heālpļæ½patieāntsļæ½managāeāļæ½trāansitionļæ½atļæ½eāndļæ½ofļæ½trāeāatmeānt.ļæ½
ā¢ Iānforāmationļæ½rāeāļæ½sigānsļæ½andļæ½syāmptoms,ļæ½sigānpostingāļæ½toļæ½seārāviceās,ļæ½ļæ½supporātļæ½andļæ½discussion.
ā¢ Iāncrāeāaseādļæ½patieāntsāļæ½knowleādgāeāļæ½andļæ½confideānceā,ļæ½kneāwļæ½whichļæ½seārāviceāsļæ½toļæ½useā,ļæ½
āIāļæ½feāltļæ½abandoneādļæ½andļæ½weāļæ½didnātļæ½knowļæ½wheārāeāļæ½toļæ½turānāMacmillanļæ½HWBļæ½surāveāyāļæ½2008
National Cancer Survivorship Initiative
Physical activity
āIāļæ½knowļæ½thatļæ½phyāsicalļæ½activityāļæ½couldļæ½heālpļæ½meāā
ā¢ Heālpsļæ½withļæ½trāeāatmeāntļæ½eāffeāctsļæ½inc.ļæ½fatigāueā,ļæ½deāprāeāssion
ā¢ Phyāsicalļæ½activityāļæ½influeānceāsļæ½brāeāast,ļæ½colorāeāctalļæ½andļæ½prāostateāļæ½morātalityāļæ½andļæ½rāeācurārāeānceā
ā¢ 12ļæ½weāeākļæ½pilotļæ½-ļæ½brāeāastļæ½canceārāļæ½surāvivorāsļæ½activeāļæ½in/afteārāļæ½trāeāatmeāntļæ½saveādļæ½NHSļæ½Ā£1500ļæ½inļæ½6ļæ½months
ā¢ ļæ½āMoveāļæ½Morāeāāļæ½campaigān
National Cancer Survivorship Initiative
*Adjusted for BMI, smoking Matched to non-cancer survivor controls on the basis of age, sex and practice
OR: 1.33
More chronic conditions Heart failure & breast cancer
Nada Khan In press BJC
National Cancer Survivorship Initiative
*Adjusted for smoking and underweight Matched to non-cancer survivor controls on the basis of age, sex and practice
OR: 1.59
More other chronic conditionsosteoporosis & prostate cancer
Nada KhanIn press BJC
National Cancer Survivorship Initiative
Consequences of cancer treatmentāIāļæ½knowļæ½aboutļæ½poteāntialļæ½prāobleāms,ļæ½howļæ½toļæ½rāeācogāniseāļæ½theāmļæ½andļæ½gāeātļæ½heālp,ļæ½andļæ½prāofeāssionalsļæ½undeārāstandļæ½theārāeāļæ½canļæ½beāļæ½solutions.āļæ½ā¢Informing patients eāgāļæ½prāomotingāļæ½useāļæ½ofļæ½ļæ½Macmillanļæ½Radiotheārāapyāļæ½bookleāts,ļæ½teāstingāļæ½weābļæ½baseādļæ½Oncolinkā¢Enabling non specialists to recognise eāgāļæ½Launchļæ½BSGļæ½gāuidanceāļæ½forāļæ½prāofeāssionalsļæ½Q4ā¢Developing specialist services eāgāļæ½forāļæ½compleāxļæ½lateāļæ½eāffeāctsļæ½ofļæ½peālvicļæ½trāeāatmeāntļæ½acrāossļæ½3ļæ½siteāsā¢Understanding patterns eāgāļæ½linkingāļæ½dataļæ½seātsļæ½toļæ½gāiveāļæ½āNHSļæ½footprāintāļæ½ļæ½forāļæ½patieānts
National Cancer Survivorship Initiative
New chronic conditions RT & CT related illnessese.g pelvic cancers
ā¢ 17,000/ year pelvic RT (UK)ā¢ gynaecological, urological,ā¢ colorectal, anal cancers ā¢ 80,000 living after pelvic RTā¢ Bowel, urinary, sexual issues
?
National Cancer Survivorship Initiative
āItās the little things put
together that wear us downā
āMy GP says for a long time he did not know what was going onā¦I
thought I was making a fuss.ā
āāMy oncologist asked how I was ā how embarrassing
to tell him.ā
National Cancer Survivorship Initiative
ā¢ To improve care for people living with the effects of cancer ā¢ Bridge the gap between research and practiceā¢ Individual and collective projectsā¢ Influencing UK research and policy agenda
12 Post Doc nurses & AHPS taking the agenda forward.
Consequences of Cancer TreatmentCollaborative (CCAT) http://www.cancerconsequences.org/index.html
National Cancer Survivorship Initiative
NCSI Vocational Rehabilitation model (draft) āNoļæ½oneāļæ½gāaveāļæ½meāļæ½adviceāļæ½andļæ½Iāļæ½lostļæ½myāļæ½jobā
National Cancer Survivorship Initiative
Survivorship Patient Reported Outcomes Measures (PROMs)
ā¢ Pilotļæ½PROMsļæ½surāveāyāļæ½toļæ½undeārāstand:ļæ½ļæ½ļæ½ļæ½ļæ½-ļæ½outcomeāsļæ½forāļæ½peāopleāļæ½followingāļæ½canceārāļæ½trāeāatmeāntļæ½oveārāļæ½timeā;ļæ½ļæ½ļæ½ļæ½ļæ½-ļæ½theāirāļæ½qualityāļæ½ofļæ½lifeāļæ½ļæ½ļæ½ļæ½ļæ½-ļæ½ļæ½varāiationsļæ½inļæ½outcomeāsļæ½eā.gā.ļæ½co-morābiditieās;ļæ½ļæ½ļæ½ļæ½ļæ½-ļæ½Egāļæ½howļæ½manyāļæ½colorāeāctalļæ½canceārāļæ½patieāntsļæ½cannotļæ½contrāolļæ½theāirāļæ½
boweālsļæ½yāeāarāsļæ½afteārāļæ½trāeāatmeānt?ā¢ 4992ļæ½queāstionnairāeāsļæ½seānt,ļæ½rāeāsponseāļæ½rāateāļæ½=ļæ½68%ā¢ Reāporātsļæ½Marāchļæ½2012ā¢ DHļæ½hopeāļæ½toļæ½furātheārāļæ½deāveālopļæ½PROMSļæ½Surāveāyā,ļæ½poteāntialļæ½nationalļæ½
rāoll-outļæ½2012.ļæ½ļæ½
National Cancer Survivorship Initiative
Success measures
āHowļæ½willļæ½weāļæ½knowļæ½thatļæ½theāļæ½NCSIāļæ½hasļæ½madeāļæ½aļæ½diffeārāeānceā?āIāmprāovingāļæ½Outcomeās:ļæ½Aļæ½Strāateāgāyāļæ½forāļæ½Canceārāļæ½(DHļæ½2011)ā¢Reāduceāļæ½%ļæ½surāvivorāsļæ½withļæ½unmeātļæ½phyāsical,ļæ½psyāchologāical,ļæ½socialļæ½neāeādsā¢Iāncrāeāaseāļæ½%ļæ½canceārāļæ½surāvivorāsļæ½ableāļæ½toļæ½liveāļæ½indeāpeāndeāntlyāļæ½/ļæ½ableāļæ½toļæ½worākļæ½ā¢whoļæ½hadļæ½canceārāļæ½asļæ½aļæ½childļæ½orāļæ½yāoungāļæ½peārāsonļæ½nowļæ½inļæ½eāducation/ļæ½eāmployāmeāntEconomicļæ½eāvideānceāPROMSEvaluationsMorāeāļæ½toļæ½beāļæ½doneā
National Cancer Survivorship Initiative
ļæ½ļæ½
Diagānosisļæ½&ļæ½Trāeāatmeānt Reāhabilitation Earālyāļæ½
monitorāingāEndļæ½ofļæ½lifeāļæ½carāeā[Yeāarāļæ½1ļæ½deāaths]
Prāogārāeāssiveāļæ½illneāss*
Neāwlyāļæ½diagānoseādļæ½āļæ½assumeādļæ½neāeādļæ½ofļæ½acuteāļæ½seāctorāļæ½
carāeā
Surāvivingāļæ½theāļæ½firāstļæ½yāeāarāļæ½āļæ½assumeādļæ½
neāeādļæ½ofļæ½rāeāhabilitationļæ½
Upļæ½toļæ½5ļæ½andļæ½10ļæ½yāeāarāsļæ½frāomļæ½diagānosisļæ½āļæ½
deāsigānateādļæ½asļæ½āeāarālyāļæ½monitorāingāā
Iāncurāableāļæ½diseāaseāļæ½butļæ½notļæ½inļæ½lastļæ½yāeāarāļæ½ofļæ½lifeāļæ½āļæ½assumeādļæ½
neāeādļæ½morāeāļæ½trāeāatmeāntļæ½andļæ½
supporāt
Endļæ½ofļæ½lifeāļæ½carāeāļæ½inļæ½lastļæ½yāeāarāļæ½āļæ½subseātļæ½ofļæ½deāathsļæ½inļæ½firāstļæ½yāeāarāļæ½ofļæ½diagānosis
Identifying the cancer care pathway
Lateārāļæ½monitorāingā
Beāyāondļæ½10ļæ½yāeāarāsļæ½frāomļæ½diagānosisļæ½āļæ½deāsigānateādļæ½ālateārāļæ½
monitorāingāā
* The numbers in the progressive illness group will be underestimated and the numbers in the monitoring groups will be overestimated as estimates for significant late effects have not been made.
We aim to estimate the number of people likely to be in a given phase of the care pathway in a given year
National Cancer Survivorship Initiative
Cancer which has spread
National Cancer Survivorship Initiative
Cancer which is incurable
National Cancer Survivorship Initiative
Recurrent cancer & the need for early treatment with chemotherapy ?
0.0
00
.25
0.5
00
.75
1.0
0
Pro
po
rtio
n s
urv
ivin
g
0 6 12 18 24 30 36 42 48 54 60
Months since randomisation
Ovarian cancer (OVO 5) Same Survival early cancer treatment or wait for symptoms (Rustin et al 2009)
EarlyDelayed
National Cancer Survivorship Initiative
Palliative care can improve survival as much as chemotherapy
National Cancer Survivorship Initiative
Breast cancer care pathway ā estimating the number of women in the UK, 2008*
Colorectal cancer care pathway ā estimating the number of people in the UK, 2008*
Lung cancer care pathway ā estimating the number of people in the UK, 2008*