Overview of relevant research for self management in hepatitis C

1. Overview of relevant research for self management in hepatitis C Carla Treloar

2. Overview Knowledge, alcohol, lifestyle changes Clinical markers Diagnosis experiences Models of care (ongoing and some proposed) Examining self management using harm reduction principles Conclusions

3. Knowledge – 4 surveys Egyptian community, Sydney, n=121 Horwitz et al. Contemporary Drug Problems. 37 (Winter), 659-683. Clients of MSIC and 4 OST clinics in Sydney, n=132 Treloar, Hull, Dore, Grebely (under review) Clients of community clinic in Christchurch NZ Horwitz, Brener, Treloar (under review) HCCNSW, OST dispensing pharmacies, OST, NSP (examine different sub-samples) Treloar et al (2011). Drug and Alcohol Dependence, 116, 52-56. Grebely et al (2011). Journal of Viral Hepatitis18(104-16)..

4. Knowledge, Egyptian community

5. Knowledge, Egyptian community

6. Knowledge, Egyptian community Higher knowledge: younger age having heard about hepatitis C having had a blood test for hepatitis C favourable attitude towards people living with hepatitis C Horwitz et al. Contemporary Drug Problems. 37 (Winter), 659-683.

7. MSIC & OST Sydney

8. MSIC & OST Sydney

9. MSIC & OST Sydney

10. MSIC & OST Sydney

11. Christchurch, NZ Clients of community clinic in Christchurch NZ • Nurse, social worker, GP • Free, ongoing engagement • Testing, preparation for treatment, support during/after treatment • N=491 clients in 3 years. Survey n = 120 Horwitz, Brener, Treloar (under review)

12. Christchurch, NZ

13. Christchurch, NZ (Sydney) 69% 17%

14. Christchurch – lifestyle changes 83% clinic provided them with the information to better manage their hepatitis C 73% felt the clinic had given them confidence to make changes in their lives to better manage their condition. Horwitz et al (under review)

15. Knowledge (Survey # 4) Treatment naive, people who inject drugs (treatment focus): Overall, knowledge poor (but risk over estimated) • 42% correct re chance of liver damage • 15% correct re chance of liver cancer Higher knowledge scores were associated with: • recruitment site (HCCNSW > dispensing pharmacies, OST) • higher education levels • recent contact with a general practitioner for any reason Treloar et al (2011). Drug and Alcohol Dependence, 116, 52-56.

16. Alcohol What are messages that people receive?: “I’ve never even had a doctor tell me I shouldn’t be drinking with hep [hepatitis] C. Most of my friends drink copious amounts, who’ve got it. And they don’t appear to have ever been advised otherwise.” “Whenever I mentioned drinking to doctors, they just kind of looked the other way. . . . They just didn’t think it was a problem. It was like, ‘What are you worried about?’” Harris (2010). Qualitative Health Research, 20(9), 1262-71

17. Alcohol Voice of medicine is paramount; lifeworlds excluded Meanings of alcohol explored; social barriers to change acknowledged -> more effective models of alcohol-related care and support Harris (2010). Qualitative Health Research, 20(9), 1262-71

18. Clinical Markers - ALT No because I know they’re very unreliable, the ALT levels. I don’t think it’s anything you can really take too seriously ... But I know that, yeah a friend of mine that doesn’t look after herself at all and is on a methadone programme, doesn’t eat any food, she’ll go and have a blood test and even when she’s using and taking methadone, she’ll have a blood test and come out with a 120 …and the doctors indicated to me that it’s not a really reliable gauge of your condition. Sutton, Treloar (2007). Journal of Health Psychology, 12(2), 330-340.

19. Clinical Markers - genotype Survey #4 Don’t know genotype: (same sample, cut differently) 60% - broad sample Grebely et al. (2011) Journal of Viral Hepatitis, 80% - treatment naïve, people who inject drugs Treloar et al (2011). Drug and Alcohol Dependence, 116, 52-56.

20. Diagnosis experiences Key moment in care and management • Study of 24 recent seroconverters (within 2 years) • 9/24 – antibody and LFT tests only Majority – experience did not meet some or any of components of national policy Treloar et al (2010). Australian Family Physician, 39(8), 589-592

21. Diagnosis experiences Key moment in care and management • Study of 24 recent seroconverters (within 2 years) • 9/24 – antibody and LFT tests only Majority – experience did not meet some or any of components of national policy Re self management: ‘Oh the doctor didn’t say anything just that, except that I have hep C. And they didn’t explain to me anything about it or anything really. I didn’t get given anything. I asked, “Do I need to change my diet or anything?” and I was told, “No, nothing I could do.”’ Treloar et al (2010). Australian Family Physician, 39(8), 589-592

22. Evolving Models** Models of care (ongoing and some proposed) Community Clinic - NZ ETHOS – hepatitis C in opiate substitution settings, incl peer support GP Initiation – specific genotyopes, ? For bocepravir/telaprovir Care for Aboriginal people • central notion of shame • living well with the virus (rather than treatment) • group treatment (McNally & Latham, 2009)

23. Evolving Models** Models of care (ongoing and some proposed) Community Clinic - NZ ETHOS – hepatitis C in opiate substitution settings, incl peer support GP Initiation – specific genotyopes, ? For bocepravir/telaprovir Care for Aboriginal people • central notion of shame • living well with the virus (rather than treatment) • group treatment (McNally & Latham, 2009) ** focus on treatment (uptake and outcomes)

24. Summary Clinical/funding/policy emphasis on treatment Lack of data on self-reported health (though it is nt’l strategy indicator) Often poor diagnosis experience Clinical markers not useful/relevant for self management Knowledge typically poor in usual care systems eg alcohol complex and socially embedded ongoing engagement can produce remarkable results Responsibilising – possibility for blame/failure (Fraser, 2004)

25. Self management & harm reduction Critique of self-management using harm reduction principles: those most likely to attend self-management interventions are well-resourced in terms of finances voice of the person is remarkably absent in research determination of the intervention by HCW • presupposes that HCW knows best what is good/right for person • interfering with the authoritative knowledge that the ill person has developed over time about what works best for him or her and under what circumstances involved as partners in decisions about the design, implementation and evaluation of self-management interventions Paterson & Hopwood (2010)

26. Self management & harm reduction Compassionate pragmatism of harm reduction: self-management requires foregrounding illness an intervention that is framed as assisting the person to comply with a prescribed regime is seen as requiring submission to authority nature and quality of the person’s relationship with the HCW or peer who is providing the intervention – but little research about this accepting a person’s goals for living with a disease as a legitimate starting point rather than singular view: avoids comply or rebel bind Paterson & Hopwood (2010)

27. Self management & harm reduction Healthism: solutions to preventing or managing illness are seen to lie in the realm of individual choice denies the social and cultural constraints that people with chronic illness experience against ‘choosing’ blame individual, undermines social efforts to improve health/well being Harm reduction theory: attempt to recognize and remove personal judgments about individual behaviour and instead focus on ameliorating the negative consequences of unhealthy practice What is considered as best-practice? Who will resist/acknowledge HR principles? Paterson & Hopwood (2010)

28. Conclusions Working with low knowledge GPs not optimal partners in self-management at this point Need ongoing engagement Community partners very important, and already doing this Telephone, online, existing networks Self-management not a “sexy” outcome Recognise that resources are required to support self-management (this is not “no cost”) & need for collaboratively defined goals

29. References Grebely, J., Bryant, J., Hull, P., Hopwood, M., Lavis, Y., Dore, G., et al. (2011). Factors associated with specialist assessment and treatment for hepatitis C virus infection in New South Wales, Australia. Journal of Viral Hepatitis, 18(104-16). Fraser, S. (2004). "It's Your Life!": Injecting drug users, individual responsibility and hepatitis C prevention. Health, 8(2), 199-221. Harris, M. (2010). Pleasure and guilt: Alcohol use and hepatitis C. Qualitative Health Research, 20(9), 1262-1271. Horwitz, R., Brener, L., Treloar, C., Sabri, W., Moreton, R., & Sedrak, A. (2010). Hepatitis C in an Australian migrant community: Knowledge of and attitudes towards transmission and infection. Contemporary Drug Problems, 37 (Winter), 659-683. McNally, S., & Latham, S. (2009). Recognising and responding to hepatitis C in Indigenous communities in Victoria. Melbourne: ARCSHS, La Trobe University. Paterson, B., & Hopwood, M. (2010). The relevance of self-management programmes for people with chronic disease at risk for disease-related complications. In D. Kralik, B. L. Paterson & V. Coates (Eds.), Translating chronic illness research into practice (pp. 111-142). London: Blackwell Synergy. Sutton, R., & Treloar, C. (2007). Chronic illness experiences, clinical markers and living with hepatitis C. Journal of Health Psychology, 12(2), 330-340. Treloar, C., Hull, P., Bryant, J., Hopwood, M., Grebely, J., & Lavis, Y. (2011). Factors associated with hepatitis C knowledge among a sample of treatment naive people who inject drugs. Drug and Alcohol Dependence, 116, 52-56. Treloar, C., Newland, J., Harris, M., Deacon, R., & Maher, L. (2010). Providing a better hepatitis C diagnosis: Insights from a qualitative study of recent seroconverters. Australian Family Physician, 39(8), 589-592. c.treloar@unsw.edu.au