St Thomases SCD Standards AO Slides

8/14/2019 St Thomases SCD Standards AO Slides

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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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Overview

History Objectives

Standards development & processes Next steps Critical success factors


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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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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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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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Who is involved?

Serviceusers

Social work

Psychology

Primary care

Haematologycounselling

Haematologyspecialists

Workinggroup


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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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Managed clinical network:high prevalence (part I)

SCDSpecialist

Centre

SCaT CentreSCD

SpecialistCentre

SCDSpecialist

Centre


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Managed clinical network:high prevalence (part II)

VoluntarySector

SocialServices

PrimaryCare

Services

Local Authority

SpecialistServicesNetwork(part I)


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Hub & spoke model: lowprevalence

Voluntary

Sector

LocalHospital

Unit

SocialServices

PrimaryCare

Services

LocalHospital

Unit

Local Authority

SCDSpecialist

Centre/ SCaTCentre


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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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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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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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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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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

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St Thomases SCD Standards AO Slides

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