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

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

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

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

Hepatitis C epidemiological landscape (estimates): Scotland 2006

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 (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

Comparison of different HCV screening approaches in general practice (A) All patients aged 30–54 years (B) Patients aged 30-54 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

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.

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%

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

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

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

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

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)

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

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

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

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

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

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

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

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

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

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