Overview of relevant research for self management in hepatitis C

Carla Treloar

OverviewKnowledge, alcohol, lifestyle changes

Clinical markers

Diagnosis experiences

Models of care (ongoing and some proposed)

Examining self management using harm reduction principles

Conclusions

Knowledge – 4 surveys

Knowledge, Egyptian community

TRANSMISSION KNOWLEDGE % correct

N

Can get HCV through unsterile tattooing and body piercing 75 90

Can get HCV through sharing razors/tooth brushes 71 85

Can get HCV through shaking hands with an infected person 67 80

Can get HCV through sharing needles and syringes 78 90

Can get HCV through unsterile vaccinations or medical procedures overseas

72 84

Can get HCV through mosquito bites 46 51

Can get HCV from blood transfusions in Australia 19 23

HCV can be transmitted from a mother to her baby inpregnancy or childbirth

48 56

Can get HCV through eating and drinking with aninfected person

55 66

Knowledge, Egyptian community

TREATMENT KNOWLEDGE % correct

N

You can get vaccinated against HCV 17 19

There are no effective treatments for HCV 35 39

In Australia, treatments for HCV have improved in thelast 10 years

56 66

Many people have been cured of HCV in Australia 46 54

Knowledge, Egyptian community

MSIC & OST Sydney

% correct n

Testing

What does it mean if you have a positive HCV antibody test?

44.7 59

What does it mean if you have a positive HCV PCR test (also known as an RNA test)?

41.7 55

MSIC & OST Sydney% correct n

Testing

What does it mean if you have a positive HCV antibody test?

44.7 59

What does it mean if you have a positive HCV PCR test (also known as an RNA test)?

41.7 55

Treatment

Is there a treatment for HCV infection? 88 116

Is there a treatment which can cure HCV infection?

69 91

What are the chances of cure following HCV treatment?

46 61

How long does HCV treatment last? 67 88

MSIC & OST Sydney% correct n

Natural history

Once you’re infected with HCV, can your body ever get rid of the virus on its own without treatment?

63 83

Does drinking a lot of alcohol increase risk of complications from HCV?

17 22

Does having HIV infection increase risk of complications from HCV

22 29

Does being obese/having diabetes increase risk of complications from HCV

27 35

Does having hepatitis C infection for more than 20 years increase risk of complications from HCV

30 39

Does HCV always cause symptoms? 42 56

MSIC & OST Sydney% correct n

Natural history

Once you’re infected with HCV, can your body ever get rid of the virus on its own without treatment?

63 83

Does drinking a lot of alcohol increase risk of complications from HCV?

17 22

Does having HIV infection increase risk of complications from HCV

22 29

Does being obese/having diabetes increase risk of complications from HCV

27 35

Does having hepatitis C infection for more than 20 years increase risk of complications from HCV

30 39

Does HCV always cause symptoms? 42 56

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)

Christchurch, NZ

% correct n

Natural history

Hepatitis C treatments can result in the hepatitis C being completely removed (or cleared from one’s blood)

89 100

Some treatment for hepatitis C, such as interferon, can cause depression as a side effect in some patients

97 109

People living with hepatitis C can damage their liver when they drink alcohol

97 114

Some hepatitis C genotypes respond better to treatment than others

96 108

Christchurch, NZ (Sydney)

% correct n

Natural history

Hepatitis C treatments can result in the hepatitis C being completely removed (or cleared from one’s blood)

89 100

Some treatment for hepatitis C, such as interferon, can cause depression as a side effect in some patients

97 109

People living with hepatitis C can damage their liver when they drink alcohol

97 114

Some hepatitis C genotypes respond better to treatment than others

96 108

69%

17%

Christchurch – lifestyle changes

% n

Changed your diet 48 47

Reduced/cut out alcohol 73 61

Increased level of exercise 19 18

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)

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.

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

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

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.

Clinical Markers - genotype

Survey #4

Don’t know genotype:

(same sample, cut differently)

60% - broad sampleGrebely et al. (2011) Journal of Viral Hepatitis,

80% - treatment naïve, people who inject drugsTreloar et al (2011). Drug and Alcohol Dependence, 116, 52-56.

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

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

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)

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)

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)

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 financesvoice of the person is remarkably absent in researchdetermination 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)

Self management & harm reduction

Compassionate pragmatism of harm reduction:self-management requires foregrounding illnessan 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)

Self management & harm reduction

Healthism:solutions to preventing or managing illness are seen to lie in the

realm of individual choicedenies 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)

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

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