Effects Service Lisa Durrant PhD Macmillan Consultant Radiographer Beacon Radiotherapy Centre Musgrove Park Hospital Taunton Why do we need late effects services Survivorship is increasing LWBC ID: 1012766
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1. South West Radiotherapy Late Effects ServiceLisa Durrant PhDMacmillan Consultant RadiographerBeacon Radiotherapy CentreMusgrove Park HospitalTaunton
2. Why do we need late effects services?Survivorship is increasingLWBC (Personalised care) initiative Improved documentation (treatment summaries)Reduced costs (remote follow up and self management strategies) Supported patients with general information and signposting (H&W events, Cancer Support Workers, level 2 psychological training)It has not provided a mechanism to manage long term, life changing symptoms
3. Consequences of treatment
4. What does Beacon Late Effects service offer?Clinical expertise:Management and support for patients with long term radiotherapy related symptoms. Single point of contact for patients to access the correct resources. Source of expertise for other HCPsService development & research:Building links with non-cancer services, developing pathways, working with CCG and community services, developing novel & sustainable solutionsEducation, training and development:Support for new services, providing training and sharing best practice, teaching, webinars etc.Professional leadership & consultancy:SoR special interest group for late effects, contributing to national guidelines
5. What can a local service achieve?Improve outcomes for patients (reduce symptoms, improve function, QoL) Provide excellent patient carePromote and support self management Prevent inappropriate referralsPrevent referrals in circlesReduce appointment costsProvide quality data
6. …but a local service cannot achieve?Care and support for everyone!Out of area patientsReferral to patients local servicesResponsibility for out of area patientsData to underpin other servicesBroad research base access to large patient numbersUniversal expertise one person can not be an expert in everything. Late effects cover all anatomical sites, all diagnoses, multiple treatment types etc.
7. Leaving it too lateRadiotherapy services have been set up with no shared planning or strategyPatients develop complex symptomsWhere do responsibility lie?Cancer patients without cancerLack of (meaningful) dataLack of consensus on terminologyLack of evidence, guidance and trialsProblems with commissioning and fundingReliance on short term charity fundingInequity in service provisionRetrospective services for legacy patients
8. Managing radiation late effects – models of carePersonalised treatmentPersonalised aftercarePersonalised careMost centres offer no late effects supportA few offer retrospective late effects support We can work together to offer prospective late effects management
9. Collecting dataCurrently lack of consensusLack of terminologyLack of diagnosisLack of reportingLack of outcome measuresLack of standardisationPRDA Best Practice Pathway: Incidence and PrevalenceGastro 2- 20%, 11%, 59%, 45%Urinary 3.7- 52%Pain 1/3, many moderate to severe and unmanageableSexual difficulties females 24%, 80%Sexual difficulties males at least 50%, 67-85%, 5-51%Lymphoedema, not understoodBone 4- 20%How many people have late effects?What are their symptoms?What was treated?How are they managed?
10. Scale of the problem?2030 –1 million with side effects (main increase in older patients)170,000 in South-West living with and beyond cancer, of these 42,000 could have treatment related consequences170,000 legacy patients does not include new patientsCost of the problem?Data shows repeated appointments in secondary care over many yearsPrimary care?Societal costs – unable to work due to unmanaged symptomsPersonal costs – ‘financial toxicity’ and quality of life (2 million/67 million) x 100 = 3%3% of 5.6 million = 170,0009333-TSO-2900664-NCSI_Report_FINAL.pdf (publishing.service.gov.uk)
11. What could a regional service achieve?Produce an information &resource hub for patients,GP’s and HCP’sWork with GP’s to build late effects into EMIS and/or develop a register Gather meaningful data to inform guidanceand best management of patients – UK firstProvide equity of service to cancer patients after treatment across the regionBuild on the LWBC initiativeRole extension and support across the region. Therapeutic rads area key to driving improvements in reducing/preventing/predictinglate effectsProduce data to develop tariff to manage patients with late effects and provide simple equipmentSave costs, outpatient appointments,GP appointments, inappropriate meds Intersectoral workingin alignment with NHS & CCG
12. Regional modelLocal referral pathways dealing with simple cases and regional pathways to help manage more complex casesSingle point of access to correct servicesVirtual MDT Standardised documentation to improve data collection and outcomesCo-ordinated trainingCore outcome data collectionLocal centres are required to link with local specialities to develop referral pathways (GP’s, lymphoedema, colorectal, gastroenterology, dermatology, orthogeraitrics, continence, counselling, neurology, breast screening, dieticians, sexual health)Regional centres for complex symptoms, specialist surgery, specialist diagnostics(RT Service Spec 2019)
13. Macmillan fundedPart Macmillan fundedAlliance or locally funded 0.4 WTENo funding Clinical team8 Radiographers1 NavigatorProject TeamSteering Group (inc patients)Data analyst Project managersCommissionersSW RT ODN (RT Service Spec 2019)Macmillan funding Alliance funding Local fundingSW CSU (data, costings, evaluation)
14. SWRLES: South West Regional Late Effects Service
15. Key Performance IndicatorsBasic service numbersQuality of LifePathways and providers of careOutcome measuresUse of primary careReporting and recording (SNOMED)eHNA DataDeveloped with commissioners(sustainable services are not funded on anecdotal evidence)Collecting data and sharing data
16. SWRLES: Core DataStandardised introduction letter (IG ratified)Referral formConsultation formActivity data (appts, phone calls, referral etc.)Core Outcome MeasuresStandardised set of outcomes that should be measured and reported, as a minimumPatient Reported Outcome Measures (PROMS)Quality of LifeAnonymised dataSites use a patient codePostcode
17. (RT Service Spec 2019)
18.
19. Data managementIndividual sitesInput informationData is assessed, scored, presentedby NaviAccess their own site dataAll anonymisedData available to analystLarge dataset of useful, core information
20. Core Outcome SetDescriptive stats & qualitative data (referral and consultation forms)Quality of LifeEORTC QLQ-C30 and EQ 5D 5LCancer-quality-of-life-survey-summary-report-first-data-release.pdf (england.nhs.uk)Site specificEORTC questionnaires - PROMS Questionnaires - EORTC - Quality of Life : EORTC – Quality of LifeMacmillan HNALong term condition managementPatient Activation Measure
21. EORTC Questionnaires(European Organisation for Research and Treatment of Cancer)Produced by evidence review with patient and HCP inputValidated, scorable, population dataDifferent languagesData on action levels, minimally important differencesLicensed but freeMany cancer typesRelevant to radiotherapy late effects Questionnaires - EORTC - Quality of Life : EORTC – Quality of LifePR20 radiation proctitisH&N43 head and neck2054 Immune Checkpoint inhibitorsMetastatic malignant melanoma (irAEs – immune related adverse events)
22. Further information?Add whatever will improve your serviceBladder diaryBlood testsPain measuresFood diariesBristol Stool ChartRange of movement measurementsFatigue scoresThis information is not required to be submitted- it does not add to the core data set
23. Sharing data - Coding and Primary CareBeyond follow-up…Primary careTreatment not recorded properlyCould be used to flag potential late effectsSNOMED CT (systemised nomenclature of medicine clinical terms)Radiation injuryChronic radiation proctitisCode diagnosis or symptom
24. Patients seen and managed by rad-led serviceResources to help patients self-manageResources for GPs to provide basic managementPatients seen, referred to local services ColonoscopyBladder instillationsLymphoedema team Patients seen, referred to regional servicesAno-rectal physiology service , SNS services Patients seen, referred to national services CCLERSNational Fatigue serviceDDRC National Radiation Cystitis Service Proposed modelUniversal, targeted, and specialistCost effective Service?Need to show that radiographer-led service is not just a referral/triage service and we can manage a cohort of patients ourselvesBuilding pathways – costing a service
25. Progress to dateAs one region…Supported each otherDiscovered new servicesServices are now seeking collaboration and information(RT ODNs, oncology menopause, SW IO service)Developing SOPs, protocols, information leafletsCommissioners are actively seeking dataAll have referralsAs many regions?...Big dataePROMSEmphasis on living rather than surviving
26. TauntonLisa Durrant, Vicki HandsRTLateEffects@SomersetFT.nhs.ukMichele Chirossel (regional navigator)Michele.Chirossel@somersetft.nhs.ukBathHazel ClarkeRuh-tr.RTlateEffects@nhs.netCheltenham & GloucesterSamantha BostockSamantha.Bostock@nhs.netBristolZoe Walkerlateeffects@uhbw.nhs.ukTruroEmma CrozierEmma.crozier1@nhs.netExeterAlexandra BoardA.Board@nhs.netTorquaySuzanne HillSuzanne.hill@nhs.net
27. Beacon Late Effects Servicelisa.durrant@somersetFT.nhs.uk01823 342933@DrLisaDurrant