1. 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

2. 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

3. 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

4. Testing, Diagnosis and Referral Issue Insufficient numbers of chronically infected persons, particularly IDUs, are diagnosed, and many diagnosed fail to reach and stay in specialist services

5. Hepatitis C epidemiological landscape (estimates): Scotland 2006

6. HCV testing in general practice
Laboratory data, 2006
380 persons newly diagnosed with HCV by GPs (representing only 4% of all GPs in Scotland)
GP survey (N=160)
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

7. Comparison of different HCV screening approaches in general practice
(A) All patients aged 30–54 years
(B) Patients aged years
with history of IDU*
(N= 1165)
Target Population
(N= 467)
Attended Practice
(during 6 months)
Offered HCV Test
117 tested  28% of those offered
110 tested  60% of those offered
HCV Tested
15 tested pos  13% of those tested
89 tested pos  81% of those tested
HCV Antibody
Positive 20 40 60 80
100
Proportion (% of N)
* Provisional data

8. 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, who’s going to take the blood …” Consultant physician
“.. I think we should be using oral fluid testing out in the community ….” Laboratory services rep.

9. 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%

10. 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

11. Treatment, Care and Support (1) Issue Widespread variations in the approach to clinical management and social care of Hepatitis C infected persons exists

12. 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

13. 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 = days

14. 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)

15. 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

16. 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

17. 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

18. 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

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

20. Focus Groups: Social Care and Support
HCV National Needs Assessment - Service Survey
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 25

21. Outward referral links at HCV treatment centres
HCV National Needs Assessment - Service Survey
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 26

22. 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

23. 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

24. 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