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February 2008 Standards of Care in SCD: Working Towards Better Care
National Standards of Care in
Adult Sickle Cell Disorders inthe UK.Dr Ade Olujohungbe
Sickle Cell Society Working Group Chair
September 2008
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February 2008 Standards of Care in SCD: Working Towards Better Care
Overview
History Objectives
Standards development & processes Next steps Critical success factors
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February 2008 Standards of Care in SCD: Working Towards Better Care
Why have standards in
the UK? Increasing patient population Newborn Screening Immigration patterns
Concerns about patient safety Wellcome trust workshop/ SC
society NCEPOD
Remove postcode lottery Access to high cost drugs Inequalities in health care
Commissioning Resource Flagship in partnership working
Medical community Voluntary sector Industry
17
14
1
1
71
Good practiceClinical improevmentOrganisational improvementClin & org improvement< SatisfactoryInsufficient info
NCEPOD grading of care
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February 2008 Standards of Care in SCD: Working Towards Better Care
Why are we doing this?
Variability of standards across the UK Wellcome-Trust Sickle Cell Report (2005)
highlighted key areas of concern for serviceusers
Compliment other related initiatives
SCD & Thalassaemia NHS Screening Thalassaemia Standards (2005) SCD in Childhood: Standards and Guidelines
(2006)
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February 2008 Standards of Care in SCD: Working Towards Better Care
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February 2008 Standards of Care in SCD: Working Towards Better Care
Objectives
Standards AND Education
To agree and publish national
standards of care for adults withSCD, endorsed by the Department
of Health and UK Forum onHaemoglobin Disorders by July
2008
To produce an educationalresource for health care providers
and service users, as well as abenchmark of acceptable standards
of care
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February 2008 Standards of Care in SCD: Working Towards Better Care
Who is involved?
Serviceusers
Social work
Psychology
Primary care
Haematologycounselling
Haematologyspecialists
Workinggroup
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February 2008 Standards of Care in SCD: Working Towards Better Care
Working group members Dr Kofi Anie Professor Elizabeth Anionwu Dr Karl Atkin Dr Wale Atoyebi Dr Moji Awogbade
Dr Lorna Bennett (DeputyChair) Dr Claire Chapman Dr Phil Darbyshire Mrs Verna Davis Dr Bernard Davis Dr Moira Dick
Dr Joanna Howard Dr Mark Layton Mr Anthony Mason Dr Asa'ah Nkohkwo Ms Ogo Okoye Dr Adebayo Olujohungbe
(Chair)
Sister Matty Asante Owusu Dr Shivan Pancham Dr Norman Parker Professor John Porter Ms Elizabeth Quarcoopome
Dr David Rees Dr Kate Ryan Dr Farrukh Shah Dr Joan St John Ms Stephanie Sulaiman Professor Swee Lay Thein Ms Iyamide Thomas Dr Christine Wright Dr Josh Wright Dr Anne Yardumian
Editorial Team Member
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February 2008 Standards of Care in SCD: Working Towards Better Care
Terms of reference
To act as a body of experts for development of standards of carefor adults with sickle cell disease (SCD)
To ensure project funding is subject to robust scrutiny, whollytransparent and open competition
To ensure industry partnerships adhere to codes of conductprescribed by the Health Coalition Initiative and the Association of British Pharmaceutical Industry
To formulate standards of care with demonstrable userrepresentation and consultation so that the views of adults withSCD are reflected
To take account of key developments that are relevant to theoperational context of the standards which include appropriatelegislation and other bodies of work
To ensure that the role of the Sickle Cell Society is clearlydescribed and acknowledged in the finished document
To ensure that the process of resolving differences of opinion isclearly communicated to the whole of the group and agreed
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February 2008 Standards of Care in SCD: Working Towards Better Care
Process
??
?Audit
???
Implementation
Productionand
launch
WorkingGroup andindependent
review
FullManuscript
Editorial Teamreview/editingprocess
Series of Editorial TeamMeetings
Literaturesearches
Writing groups
develop draftcopy
ConveneWorkingGroup:
Developmentof Standards
structure,content andformat
We arehere
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February 2008 Standards of Care in SCD: Working Towards Better Care
Who is it aimed at?SCD Adult Standards of Care
SCD Community Health Care Community
Service Users
Carers
Social Services
Consultant Haematologists/Specialist Nurses
GPs/ Practice Nurses
Psychologists/ HaemoglobinopathiesCounsellors
A&E Consultants/ Nurses/Paramedics
Commissioners/ NHS Payors
Expert Patients
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February 2008 Standards of Care in SCD: Working Towards Better Care
Standards contents
Forward Executive Summary Methodology
Summary of Standards SCD: Overview Organization of Care &
Commissioning SCDServices
Managing AcuteComplications
Managing ChronicComplications
Pregnancy,Contraception &Fertility
Issues in Blood Transfusion
Surgery & Specific Therapies
Appendices Glossary
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February 2008 Standards of Care in SCD: Working Towards Better Care
Six Principal Standards
1. Pain managementa) 2hr target
2. Acute complicationsa) Vital signs
3. Detecting and managing chronic complicationsa) screening
4. Setting up networks of care with user involvementa) Organisation of care levels
5. Education and traininga) Patientsb) Health care workers/ Commissioners
6. Adequate resourcesa) Auditb) Access to high cost interventions
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February 2008 Standards of Care in SCD: Working Towards Better Care
Levels of evidence (A gency for Healthcare Research and Quality 1992)
(A) requires at least one randomised trial as part of bodyof literature of overall good quality and consistencyaddressing specific recommendation
(B) Requires availability of well conducted clinical studiesbut no randomised clinical trials on topic of therecommendations
(C) Requires evidence from expert committee reports oropinions and or clinical experience of respected authorities.Indicates absence of directly applicable studies of goodquality.
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February 2008 Standards of Care in SCD: Working Towards Better Care
Recommendations for best practiceIron Overload.
Not frequently recognised in intermittent users in SCD. Limited evidence of worsening clinical outcomes in SCD. Accurate transfusion history required. Start chelation >20 transfusions or LIC >7mg/g dry weight
(C). Serial Serum Ferritin trends in steady state useful Adjunctive quantitative hepatic iron measurements T2*MRI
(C).
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February 2008 Standards of Care in SCD: Working Towards Better Care
1. Pain management
Commonest presentation to Hospital and corecomponent of resource utilisation.
Rapid assessment.
Effective analgesia within 30 mins ( Rees et al2003).
Pain control within 2 hrs with continuousevaluation fundamental to success.
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February 2008 Standards of Care in SCD: Working Towards Better Care
2.Acute complications
At AED, Assessment for acute and potentially lifethreatening complications e.g. Chest Syndrome.
Basic observations ( TPR) recorded regularly Competent clinical expertise on hand to managed these
complications
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February 2008 Standards of Care in SCD: Working Towards Better Care
3.Chronic complications
Regular outpatient follow up Mechanism for contacting defaulters at 1 o care level
Screening for complications e.g. PHT , renal, iron overload Screening for other medical complications e.g. prostrate,
DM. Combined specialist clinics in Pregnancy.
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February 2008 Standards of Care in SCD: Working Towards Better Care
Indications for transfusiontherapy in SCD
Heart failure Prophylaxis against
recurrent stroke Cardiopulmonary
Chronic pulmonaryhypertension
Refractory congestiveheart failure
Hydroxyurea non-responders
Previous splenicsequestration in childrenaged 23 years
Chronic pain
Anaemia Stroke Acute chest syndrome Preoperative (in some cases) Acute multiple-organ failure
syndrome Preoperative Malaria-associated severe
hemolytic anemia
Long-term managementAcute intervention
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February 2008 Standards of Care in SCD: Working Towards Better Care
Transfusional iron overload inSCD
0
10
20
5
15
25
30
0 20 40 60 80 100 140120 160
I r o n
( m g
/ g d r y
w e
i g h t )
Transfusion duration (months )
R=0.795
Harmatz P et al. Blood 2000;96:7679, permission pending
Whole body iron is a major determinant of morbidity andmortality in SCD
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February 2008 Standards of Care in SCD: Working Towards Better Care
Comparison of chelators
Deferasirox 5,6Deferiprone 3,4DFO 1,2Property
Oralonce daily
Oral3 times daily
s.c., i.v.(812 hours,5 days/week)
Route
816 hours34 hours2030 minutesHalf-life
FaecalUrinaryUrinary, faecalExcretion
Gastrointestinaldisturbances, rash, mild
non-progressivecreatinine increase,
elevated liver enzymes,ophthalmological,
auditory
Gastrointestinaldisturbances,
agranulocytosis/neutropenia,
arthralgia, elevatedliver enzymes
Local reactions,ophthalmological,auditory, growth
retardation, allergic
Mainadverseeffectsin PI
LicensedLicensed outsideUS/Canada
LicensedStatus
2030752560Usual dose(mg/kg/day)
1Olivieri NF, et al. Blood. 1997;89:739-61. 2Deferoxamine [package insert]. Novartis; 2002. 3Kushner JP, et al. Hematology . 2001;47-61.4Deferiprone [package insert]. Apotex Europe Ltd; 1999. 5Cappellini MD, et al. Blood. 2006;107:3455-62. 6Deferasirox [package insert]. Novartis; 2005.
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February 2008 Standards of Care in SCD: Working Towards Better Care
4.Care networks
Access to a wide range of services Close to home where appropriate Facilitated access to specialist clinics for complex care User representation at all times
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February 2008 Standards of Care in SCD: Working Towards Better Care
Access to care
ServiceUser
Carers/ Family
Education/ EPP
COMMUNITYSCaT Centres/ Primary Care/ Social
Services
HOSPITALLocal Hospital Unit/ SCD Specialist Centre
M u l t i d i s c
i p l i n a r y w o r k
i n g
M u l t i d i s c
i p l i n a r y w o r k
i n g
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February 2008 Standards of Care in SCD: Working Towards Better Care
Managed clinical network:high prevalence (part I)
SCDSpecialist
Centre
SCaT CentreSCD
SpecialistCentre
SCDSpecialist
Centre
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February 2008 Standards of Care in SCD: Working Towards Better Care
Managed clinical network:high prevalence (part II)
VoluntarySector
SocialServices
PrimaryCare
Services
Local Authority
SpecialistServicesNetwork(part I)
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February 2008 Standards of Care in SCD: Working Towards Better Care
Hub & spoke model: lowprevalence
Voluntary
Sector
LocalHospital
Unit
SocialServices
PrimaryCare
Services
LocalHospital
Unit
Local Authority
SCDSpecialist
Centre/ SCaTCentre
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February 2008 Standards of Care in SCD: Working Towards Better Care
Required services:summary
SERVICES SPECIALIST CENTRES LOCAL HOSPITAL COMMUNITY
A&E/ Out-patients/ Phlebotomy In-patient beds (supported by specialist input) (to manage common uncomplicated
presentations)Day unit (extended hours) (extended hours) Day assessment/ treatment areaPrescribing Nurse prescribingPain management Home care pain servicePsychology service (access only) Genetic counselling services (access only) (access only) Genetic counselling
Interpreting & advocacy services Social work service (access only) (access only) Social work serviceStroke risk screening/TCD Stroke care (inc. emergency management,
specialist diagnostics & initiatingtransfusion)
(inc. ongoing transfusion & ironchelation)
Stroke rehabilitation
Surgery (complex surgery inc orthopaedicservices)
(low risk surgery in liaison withspecialist centre team)
Urological & renal services (inc. access to dialysis and t ransplant)SCD obstetric care High dependency care and ITU Specialist liver service (access only)SCD respiratory services Pulmonary hypertension (screening & access to tertiary centres)SCD ophthalmology (inc. retinopathy screening) Erythrocytopheresis (&/or facilities for manual red cell
exchange)Diagnostic imaging (CT/MRI)Lab. support (diagnostics &transfusion)
(appropriate CPA-accredited support) (appropriate CPA-accredited support)
Annual clinical reviews
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February 2008 Standards of Care in SCD: Working Towards Better Care
5.Education and training
Education of patients, carers and health professionals onSCD.
Accessible protocols and policies in clinical areas. CPD documentation Competency assessment Support for Expert patient programmes
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February 2008 Standards of Care in SCD: Working Towards Better Care
6. Adequate resourcesCommissioning
Specialist commissioning for SCD services Evidence based Equal access to high cost drugs and
interventions. Audit & peer review. Service improvement
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February 2008 Standards of Care in SCD: Working Towards Better Care
Exjade funding status, sickle cell disease July 2008
5% 7% 4%
9%
1%
74%
Funding not approved Approved on a named patient basisApproved under Service Level Agmt Trust fundingFunding decision pending Funding not requested
Total number of PCOs recorded: 210Market Survey
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February 2008 Standards of Care in SCD: Working Towards Better Care
TCD in SCD
No strong evidence in Adults In paediatrics 90% of sickle cell centres should have
capability of offering annual TCDs to children with SCDfrom age of 3yrs by 2008.
This should increase to 99% by 2010. Development and commissioning is vital. What Next?
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Research Development
Paucity of grade A evidence in Adult SCD. Clinical trials network centrally funded with research and
administrative staff e.g. LRF, MRC, NCRI. Not reliant on goodwill of clinicians and support staff
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Critical success factors
Peer review and endorsement Production planning
Successful launch/ high awareness Implementation Audit and measurable improvement
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A poisoned Chalice?
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February 2008Standards of Care in SCD: Working Towards Better Care
Questions?
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