Hepatitis C Testing, Treatment, Care and Support

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Hepatitis C Testing, Treatment, Care and Support

• Dr Kirsty Roy
• Health Protection Scotland
• On behalf of Members of the Working Group
• on Testing, Treatment, Care and Support

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Testing, Treatment, Care and Support Working
Group Activities

• Overall aim
• to gather robust data to inform the development
  and expansion of testing, treatment and care
  services beyond 2008
• Specifically,
• to describe the existing provision of HCV
  testing, treatment, care and support services
  across Scotland
• to examine the way in which HCV services operate
  with regard to testing, treatment, care and
  support
• to identify gaps in and issues related to
  existing HCV service provision

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Hepatitis C Needs Assessment Information Sources

• Questionnaire surveys
• All Laboratories undertaking HCV testing
• Services on HCV Directory (71 response)
• GP training practices (69 response)
• Focus groups interviews (29 service providers)
• Literature review
• Surveillance data
• National HCV Diagnoses Database
• Local HCV Clinical Databases
• Modelling and cost-effectiveness studies

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Testing, Diagnosis and ReferralIssueInsufficien
t numbers of chronically infected persons,
particularly IDUs, are diagnosed, and many
diagnosed fail to reach and stay in specialist
services
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Hepatitis C epidemiological landscape
(estimates) Scotland 2006
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HCV testing in general practice

• Laboratory data, 2006
• 380 persons newly diagnosed with HCV by 200
  GPs (representing only 4 of all GPs in Scotland)
• GP survey (N160)
• Majority practices indicated that GPs should
  undertake pre- and post- test discussion, while
  practice nurses should undertake HCV testing
• Only 18 practices actively seek out risk
  factors to offer an HCV test

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Comparison of different HCV screening approaches
in general practice
(B) Patients aged 30-54 years with
history of IDU
(A) All patients aged 3054 years
(N 1165)
Target Population
(N 467)
Attended Practice (during 6 months)
Offered HCV Test
HCV Tested
100
0
20
40
60
80
Proportion ( of N)
Provisional data
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Comparison of different HCV screening approaches
in general practice
(B) Patients aged 30-54 years with
history of IDU
(A) All patients aged 3054 years
(N 1165)
Target Population
(N 467)
Attended Practice (during 6 months)
Offered HCV Test
HCV Tested
HCV Antibody Positive
0
20
40
60
80
100
Proportion ( of N)
Provisional data
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Barriers to testing and diagnosis
Alternatives

• Need for venepuncture
• .. some people might not want tested if they
  have poor venous access because it can be
  embarrassing .. Clinical nurse specialist
• .. a major problem when we are implementing our
  outreach programme was actually well, whos going
  to take the blood Consultant physician
• .. I think we should be using oral fluid testing
  out in the community . Laboratory services
  rep.

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Barriers to testing and diagnosis

• Lack of awareness
• .. There are several thousand individuals in
  Scotland with undiagnosed hep C who have never
  had a history of injecting or sexual contact with
  drug injectors, who have acquired their infection
  either sexually or iatrogenically.who
  would never, ever consider themselves to be at
  risk of hepatitis C.I think thats a
  particularly difficult to reach group when it
  comes to testing .. Consultant physician

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Referral to Specialist Care
Referral to specialist care should be
considered for all patients with active HCV
infection (HCV RNA positive) SIGN, 2006
HCV service survey GP survey
Number providing HCV testing 82 145
Would offer referral to Ab ve PCR -ve 40 82
Would not offer referral to Ab ve PCR ve 11 6
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Testing, Diagnosis and Referral

• Phase II Actions
• Action 10 NHS Boards to develop and implement a
  plan, to improve HCV testing and referral
  activities by GPs and other community setting
  practitioners
• Action 11 An awareness raising campaign, to
  prompt Hepatitis C testing among those at risk of
  being infected, will be implemented and evaluated
• Action 12 A programme of work to evaluate
  different approaches to Hepatitis C testing/body
  fluid sampling
• Outcome
• A reduction in the proportion of Hepatitis C
  infected individuals who are undiagnosed

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Treatment, Care and Support (1)IssueWidespread
variations in the approach to clinical management
and social care of Hepatitis C infected persons
exists
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Among GPs in their approach to diagnosing HCV
infected individuals

• The majority of practices opportunistically offer
  HCV test when client presents with i) a history
  of appropriate risk or ii) medical indications
  of liver disease
• Less than 20 would actively seek out risk
  factors to offer a test

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Among laboratories in the way they test and
report results to clinicians

• Multiple tests performed
• Minimum 1 Ab test and 1 PCR test on 1st
  sample
• Maximum 2 Ab tests and 1 PCR test on 1st
  sample, plus 2 Ab tests and 1 PCR test on 2nd
  sample
• Median turn-around time for antibody and PCR test
  results at local and reference laboratories
  15-21 days

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Among clinics in the approaches they take to
manage their patients

• 20-70 of referred patients fail to attend first
  appointment
• HCV service survey (12 clinics)

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Treatment, Care and Support (1)

• Phase II Actions
• Action 1 Establishment of MCNs for all NHS
  Boards
• representation from relevant specialists in
  healthcare and other stakeholder groups (prison,
  local authority, social work, voluntary sector,
  mental health, addictions, patient
  representative)
• Practice guided by Care guidelines and SIGN
  guidelines on the management of Hepatitis C
• Action 2 Standards for Hepatitis C testing and
  the treatment care and social support of person
  with HCV infection to be developed by NHS Quality
  Improvement Scotland
• Outcome
• Effective and where appropriate, consistent
  approaches to the diagnosis and management of
  Hepatitis C infected persons

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Treatment, Care and Support (2)Issue
Insufficient numbers of infected persons
receiving antiviral treatment, and resources to
support the persons journey through the patient
pathway are inadequate
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Numbers attending HCV treatment centres in
Scotland (to end 2006)
Ever (Living Dead) Living
Diagnosed HCV Antibody ve 22,073 19,400
Diagnosed with chronic HCV (estimated) 16,500 14,500
Attended specialist services for chronic HCV (estimated) 9,000 8,000
Approx 55 of persons living with diagnosed
chronic HCV have ever been in specialist care
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Numbers initiated on HCV antiviral therapy in
Scotland (to end 2006)
Ever (Living Dead)
Diagnosed HCV Antibody ve 22,073
Diagnosed with chronic HCV (estimated) 16,500
Attended specialist services for chronic HCV (estimated) 9,000
Initiated on HCV antiviral therapy (estimated) 2,300

• Approx 55 of persons ever diagnosed with chronic
  HCV have ever been in specialist care
• Approx 14 of persons ever diagnosed with chronic
  HCV have been initiated on antiviral therapy

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Follow-up of patients first attending HCV
treatment centres during 2003-2005 (Data from 5
clinics)
New attendeesN964
Assessed for Rx55 range 31-70
Not assessed for Rx24 range 17-31
Under assessment for Rx21 range 6-48
Not offered Rx32 range 17-77
Offered Rx68 range 23-83
30 of PCRve new attendees began HCV antiviral
therapy range 8 50
Rx HCV antiviral therapy
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Future burden of HCV disease among IDUs in
Scotland
Uptake of HCV antiviral therapy during 2008-2030 Uptake of HCV antiviral therapy during 2008-2030
225 per year 2,000 per year
Year 2008 2030 2030
Living with Chronic HCV 35,700 41,200 26,800
Living with Cirrhosis 2,000 3,200 1,900
Liver failures (per year) 105 170 100
Increasing uptake of therapy to 2,000 per year
(2008-30) will prevent approx 5,200 cirrhosis
cases and 2,700 liver failures
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Treatment, Care and Support (2)

• Phase II Actions
• Action 6 Testing, treatment, care and support
  services within each NHS Board will be developed
  to increase the number of persons undergoing
  therapy in Scotland
• 450/year to 500 in 2008/09
• 1,000 in 2009/10
• 1,500 in 2010/2011
• At least 2,000 per year thereafter
• Action 7 SLAs/Memoranda of Understanding between
  NHS Boards Scottish Prison Service to promote
  the treatment of Hepatitis C infected inmates in
  prisons to be developed in the context of the SPS
  Blood Borne Virus strategy
• Outcome
• An increase in the number of persons who clear
  their infection and thus reduce the numbers of
  infected persons developing sever Hepatitis
  C-related liver disease

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Treatment, Care and Support (3)Issue Lack of
integration among primary care, specialist,
addiction, prison and social care services
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Focus Groups Social Care and Support

• Many clients chaotic lifestyles
• Major barrier to entering and remaining on
  pathway
• Many clients require significant social support
• Currently limited
• Provide from early stage
• Support for development of dedicated services
• Partnership working
• Need improved communication and clear referral
  routes between services

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Outward referral links at HCV treatment centres

• Proportion of HCV treatment centres reporting
  outward referral links to the following services
• Drug alcohol 5/12 clinics
• Mental health 5/12 clinics
• Social care 3/12 clinics
• Voluntary sector support 2/12 clinics

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Treatment, Care and Support (3)

• Phase II Actions
• Action 8 NHS Boards to develop and implement a
  formal plan, for integrating specialist services
  with those for social care, mental health and
  addiction in local authority, voluntary sector,
  primary care and secondary care settings.
• Action 9 Local Authorities will identify a
  strategic and operational lead for Hepatitis C
  infection
• Outcome
• An integrated approach to the management of
  Hepatitis C infected persons involving Hepatitis
  C treatment, social care and mental
  health/addiction

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Testing, Treatment, Care and Support Phase II
Actions summary
Aim To ensure that those infected receive
optimal treatment, care and support

• Actions Measures to improve clinical and
  support services
• Managed Care Networks Standards
• National workforce development framework
• Increase the number of patients on therapy
• Integrated approach, involving HCV treatment,
  social care,
• SLAs/MoU between NHS Boards and SPS
• mental health/addiction services
• National HCV Clinical Database

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• Acknowledgements
• Members of the Working Group on Testing,
  Treatment, Care Support
• Participants of the HCV Needs Assessment
  Surveys Focus Groups
• Laboratories and HCV Clinics providing data for
  the National HCV Diagnoses Database and Local HCV
  Clinical Databases
• HCV Needs Assessment Team Beth Cullen, David
  Goldberg, Gillian Hawkins, Sharon Hutchinson,
  Scott McDonald, Allan McLeod, Justin Schofield,
  Amanda Weir, and Toni Williams