Hepatitis C Services in Waterloo Region

Transcription

1 Hepatitis C Services in Waterloo Region A Situational Assessment May 2010 ACCKWA The AIDS Committee of Cambridge, Kitchener, Waterloo & Area Sanguen Health Centre

2 Funding for this report and the Hepatitis C Outreach Practical Support Worker Project provided by the Public Health Agency of Canada. Prepared by: Information and Planning Program, Infectious Diseases, Dental and Sexual Health Division, Region of Waterloo Public Health For more information on this report please contact: Region of Waterloo Public Health 99 Regina Street South Waterloo, Ontario N2J 4V3 (519) For more information on the Hepatitis C Outreach Practical Support Worker Project please contact: The AIDS Committee of Cambridge, Kitchener, Waterloo & Area (ACCKWA) 2B-625 King Street East Kitchener, Ontario N2G 4V4 (519) Sanguen Health Centre 29 Young Street East Waterloo, Ontario N2J 2L4 (519)

3 Table of Contents Executive Summary... 3 Background... 5 Methods... 9 Results Discussion References Appendices #

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5 Executive Summary Hepatitis C is a viral infection carried in the blood caused by the hepatitis C virus (HCV). In Waterloo Region, the most common risk factor for hepatitis C is injection drug use. Other high-risk groups for HCV infection include people who: were formerly incarcerated, spent time in a region where hepatitis C is endemic, received a blood transfusion before 1992, and received healthcare in a country lacking universal precautions. Tattooing or body piercing with nonsterile equipment and needle stick injuries can also cause HCV transmission. The number of new positively screened cases of hepatitis C in Waterloo Region remained relatively stable from with an average of 132 new cases per year, with a corresponding rate of 26.4 per cent per 100,000. The total number of infected individuals is expected to be underrepresented as many at risk (or formerly at risk) for HCV have not been tested. It is therefore imperative that those at risk for hepatitis C be provided with the services and supports required to prevent infection or seek screening, treatment and support for their hepatitis C status. A situational assessment examines the legal and political environment, stakeholders, the health needs of the population, the literature and previous evaluations as well as the overall vision for a certain project or topic area (MOHLTC 2008). This purpose of this study is to complete a situational assessment on hepatitis C services in Waterloo Region. Two methods were used to gather data: individual questionnaires with people infected, affected, and at risk for HCV and focus groups with hepatitis C service providers and healthcare providers. A review of literature was also conducted to provide background to the topic area and support findings. Questionnaires asked about participant demographics, hepatitis C knowledge, risk behaviours, previous testing for hepatitis C, services used in Waterloo Region, difficulties accessing services, and preference for receiving hepatitis C information. Focus group questions related to clients knowledge of hepatitis C, existing hepatitis C services in Waterloo Region, strengths of services, barriers to accessing and providing services, models of care, and opportunities for improving services in Waterloo Region. Frequencies were run for each variable in the questionnaire and cross-tabulations for potentially relevant findings were conducted. Summary themes for each focus group question were also created. A total of 149 questionnaires were completed with persons infected, affected or at risk for hepatitis C. Service and healthcare providers from 12 organizations in Waterloo Region were represented at the focus groups. The majority of questionnaire participants engaged in at least one risk behaviour for hepatitis C. Relating to the use of equipment, 27 per cent indicated they shared needles for injecting drugs, while 58 per cent of the participants had shared pipes and other equipment when smoking or inhaling drugs. Forty-six per cent had received a homemade tattoo or piercing. Focus group participants indicated that few at risk populations are aware of the specific details around transmission and prevention of hepatitis C. This finding was also demonstrated in the questionnaire results which showed that only 16 per cent of participants correctly identified that hepatitis C presented no symptoms in the first few years of infection. Various positive aspects about current hepatitis services available in Waterloo Region were revealed from the situational assessment such as: the availability of clean needles (through the needle exchange program), non-judgemental service provision, anonymous services (prevention, support), outreach services and support services provided through the AIDS Committee of Cambridge Kitchener Waterloo and Area. Notable barriers related to hepatitis C services in Waterloo Region included: transportation to medical appointments (particularly for Cambridge), inadequate prevention, treatment and support services targeting hepatitis C at risk groups, the lack of comprehensive patient management, inadequate knowledge about hepatitis C by some healthcare and service providers, and a lack of coordination or collaboration among existing providers in Waterloo Region. Opportunities to build on current strengths, and mitigate the barriers to service were discussed. These ideas included: a coordinated collaborative strategy for hepatitis C in Waterloo Region, a one-stop shopping clinic for liver treatment services, increased support services for hepatitis C, increased prevention services for hepatitis C, professional development around hepatitis C for service providers, expansion of outreach services, and long-term strategies to address the broader determinants to hepatitis C infection. #

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7 Background Hepatitis C is a viral infection carried in the blood caused by the hepatitis C virus (HCV). Transmission of HCV normally occurs through contact with infected blood. HCV infection causes inflammation in the liver which may progress to a more chronic infection. Over time, chronic hepatitis C infections may lead to cirrhosis (extensive scarring of the liver) and liver failure so that the organ cannot perform its normal functions). Hepatitis C associated cirrhosis is the leading cause for liver transplantation (Health Canada 2009). However, many people who have been infected with hepatitis C do not present with symptoms for decades. Currently, there is no vaccine for hepatitis C. It is therefore imperative that those at high risk for HCV exposure take extra precautions as they may unknowingly spread the infection. Populations at Risk Compared to the human immunodeficiency virus (HIV), HCV is 10 to 15 times more transmissible by blood, and a single injection with a contaminated needle may result in transmission of the infection (Canadian Liver Foundation 2000). Because there currently is no vaccine for HCV, prevention is vital for persons at risk. A risk factor is a behaviour, setting or event that most likely increases the chances of a person to be exposed to and acquire a disease (PHAC 2001). People at risk can be categorized as having high, intermediate, or low risk for hepatitis C (Table 2) (PHAC 2009, Steingart 2008, Region of Waterloo 2006). Table 2: High, intermediate, and low risks associated with HCV exposure High Risk Intermediate Risk Lower Risk People who inject drugs Hemodialysis Patients Mother-to-child transmission Blood transfusion, blood products, or organ transplant before 1992 Tattooing and body piercing (with nonsterile equipment) Higher risk sexual behaviour Incarceration Born, traveled, or resided in a region in which HCV infection is more common Receipt of healthcare in a country where there is a lack of universal precautions Street involved youth High Risk Needle stick injuries Sharing sharp instruments / personal hygiene materials with hepatitis C positive person Healthcare workers and emergency responders In Canada, injection drug use (IDU) is the predominant risk factor for HCV. Persons who inject drugs account for approximately 63 per cent of new HCV infections in Canada each year (PHAC 2007). This is due to the sharing of needles, syringes, spoons, cookers, filters, and other injection equipment that may be contaminated with infected blood. This Canadian finding is echoed in Waterloo Region, where the most commonly known factor for hepatitis C was injection drug use (21 per cent; n = 1537) (Region of Waterloo 2006). It is estimated that there are 41, 000 IDUs in Ontario and approximately 5700 IDUs in Central West (Millson 2004). Of the 5700, it is estimated that 1175 are in Waterloo Region; this is the second highest IDU population in the Central West area (Region of Waterloo 2006). Current prisoners or people who have been formerly incarcerated are also at an increased risk for HCV infection. Risk of infection will range from moderate to high depending on their exposure to shared drug injection materials and tattooing and piercing materials that are potentially contaminated. Also at high risk for hepatitis C are persons who were exposed to contaminated blood, blood products, or organ transplants before 1992 in Canada (prior to the introduction of sensitive blood screening tests). Since the introduction of universal testing in blood and organ donors, the risk infection through contaminated blood products has substantially reduced. #

8 Further, persons who were born, travelled, or resided in a region in which HCV infection is more common may be at high risk for hepatitis C infection. High endemicity of hepatitis C (greater than two per cent of the population) can be found in many countries in Africa, Latin America and Central and South-Eastern Asia. Likewise, persons from a region in which HCV infection is more common are also likely to encounter a healthcare system where there is a lack of universal precautions. For example, persons from less developed countries may receive invasive medical or dental procedures from contaminated equipment that was not properly sterilized. Consequently, new Canadians that have emigrated from other countries are at higher risk for hepatitis C (Health Canada 2009, PHAC 2009, CFPC 2009, Remis 1998, Strathdee 1997). Lastly, street involved youth have been identified as a particularly vulnerable population for HCV infection (Dinner 2005). In a study of seven urban Canadian cities, the Public Health Agency of Canada found that an average of 20 per cent of street youth injected drugs at some point. Rates of HCV infection among the street youth populations in this study averaged four per cent overall, which is well above the prevalence estimated within the general population. Intermediate Risk Hepatitis C is transmitted primarily through large or repeated exposures to infected blood. Hemodialysis is a method for removing waste products or free water from the blood. Long-term hemodialysis patients have frequent but small direct exposures to blood, which places them at a moderate risk for hepatitis C transmission. The risk is especially small in developed countries, such as Canada, where infection control protocols are rigorous. Furthermore, tattooing and body piercing that is done with non-sterile equipment puts people at an intermediate risk for hepatitis C. Likewise, being pricked by a needle or sharp object that has infected blood on it may put one at an intermediate risk for contracting hepatitis C. This may occur in a workplace situation such as a healthcare facility. Moreover, sharing personal hygiene materials such as razors, scissors, nail clippers or a toothbrush with an infected person is also an intermediate risk factor for hepatitis C (Health Canada 2009, PHAC 2009, CFPC 2009). Low Risk During pregnancy, an infected mother may pass hepatitis C to her newborn child (vertical transmission). There is also a very low risk of HCV transmission from mother-to-child through breast milk. Similarly, there is a low risk for HCV transmission in the presence of infected blood via sexual behaviours. For example, persons that have unprotected sex with a hepatitis C positive partner in a non-monogamous relationship or persons that engage in anal sex are at low risk (Health Canada 2009, PHAC 2009, CFPC 2009, PHAC 2001). Burden of Illness in Waterloo Region In 2009, The World Health Organization (WHO) estimated that about 180 million people, approximately 3 per cent of the world s population, were infected with the hepatitis C virus (WHO 2009). In developed countries, such as Canada, disease prevalence is relatively low. Current approximations in Canada estimate that 250,000 people are infected with HCV, corresponding to a prevalence rate of approximately 0.7 per cent of the total population (Health Canada 2009). Given the time between infection and the onset of symptoms of liver damage (often 20 to 30 years), the Public Health Agency of Canada (PHAC) predicts a doubling or tripling of disease conditions related to HCV infection in the future (PHAC 2009). In Ontario, approximately 120,000 people have been infected with HCV (Region of Waterloo 2006). However, this number may underestimate the total number of people infected with HCV as 35 per cent of Canadians who have hepatitis C, do not know they are infected (Region of Waterloo 2006). Individuals who are infected with hepatitis C but who do not experience symptoms are of particular concern as they might not get tested. Without knowing their status they may potentially engage in high risk behaviours and ultimately transmit the infection. In Waterloo Region, the total number of people living with hepatitis C is unknown. However, data is available for the incidence of newly reported cases for Waterloo Region (Table 1, Figure 1). Based on this information, the number of #

9 new positively screened cases of HCV remained relatively stable from with an average of 132 cases per year with a corresponding rate of 26.4 per cent per 100, 000. This number is lower than the average of newly reported cases (n = 169) in Waterloo Region from Waterloo Region s rate is slightly lower than the Ontario average. The total number of infected individuals, and subsequent burden of disease, however is expected to be underrepresented in Waterloo Region. Testing for hepatitis C is generally not part of routine medical care and follow-up. However, testing may be performed when a physician identifies a potential risk for HCV in an individual s history. In Waterloo Region, 77 per cent of cases were identified through physician ordered screening (Region of Waterloo 2006). Testing to diagnose infection as a result of symptoms identified only five per cent of newly reported cases (Region of Waterloo 2006). Table 1: Number and rate of new hepatitis C cases*, Waterloo Region and Ontario, Year Number of new cases Rate per 100,000 Waterloo Region Ontario Waterloo Region Ontario N/A 32.5 N/A , , , , N/A 22.8 N/A *Initial HCV antibody screening tests confirms exposure to HCV and does not indicate active disease. Active disease is confirmed by specialized testing (RNA probe). Figure 1: Rate of new hepatitis C cases, Waterloo Region and Ontario, Rate per 100, Waterloo Region Ontario Year #

10 Hepatitis C Services in Waterloo Region The Hepatitis C Outreach Practical Support Worker Project is an initiative led by the AIDS Committee of Cambridge, Kitchener, Waterloo and Area (ACCKWA) in partnership with Region of Waterloo Public Health (ROWPH). The project is intended to target high risk groups for hepatitis C such as people who inject drugs, sex workers, homeless and precariously housed individuals, street involved youth, immigrant populations from endemic countries, and people who were formerly incarcerated. The project is to provide easily understood, accessible and accurate information regarding hepatitis C transmission, personal health and treatment to persons in high risk groups within a client friendly environment. One component of the project includes a situational assessment led by the Infectious Diseases, Dental and Sexual Health Division of Region of Waterloo Public Health. An environmental scan and gap analysis of community agencies offering services for people infected, affected, or at high risk for hepatitis C is a first step in conducting a situational assessment for Waterloo Region. As a result of the scan, it was found that Waterloo Region has many organizations dedicated to providing a variety of services to persons infected, affected, and at high risk for hepatitis C. Although these services are striving to overcome many challenges, it must be noted that there are gaps in services within the region, as stated in the HCV Strategy Report (Steingart 2008). Firstly, Waterloo Region lacks an organization that oversees all community agencies offering services for people infected, affected, and at risk for hepatitis C. As stated in the HCV Strategy Report 2008, There is no umbrella organization that adequately coordinates access to these services to ensure that [clients] receive proper and timely medical care (Steingart 2008). This gap means that persons with hepatitis C must solely navigate their way through community agencies and a fragmented healthcare system. Secondly, there is a heightened need for improved community awareness and education about hepatitis C. This includes, but is not limited to: increased education on risk factors associated with HCV transmission, the physical effects of hepatitis C, access to community services, and hepatitis C treatment and support options (Steingart 2008). Consequently, increased community awareness will likely reduce the stigma often associated with HCV infection. Moreover, persons infected, affected, and at high risk for hepatitis C were identified by Steingart (2008) to need support to manage their infection. In Waterloo Region, few support groups for people infected with hepatitis C exist. The Hepatitis C Society Kitchener Area Chapter provides monthly meetings and support for people with HCV, however, the group is largely comprised of people who were infected with hepatitis C from blood products prior to 1992 in Canada. The support group is not directed at the community s most marginalized and high risk populations for hepatitis C such as people who inject drugs, sex workers, homeless and precariously housed individuals, street involved youth, immigrant populations, and people who were formerly incarcerated. Lastly, there is a lack of specialized physicians, nurses, and healthcare workers treating patients with hepatitis C in Waterloo Region. The increasing number of people infected with hepatitis C and the decrease in specialized service providers means that many people are not adequately treated. Although there are a handful of gastroenterologists and a physician that treat persons with hepatitis C residing within the region, they cannot provide service to all clients who require care (Steingart 2008). Furthermore, it is often difficult for family physicians to refer clients to a hepatitis C specialist as many organizations do not have an adequate referral system in place. This means that family physicians are merely following clients with HCV but are not referring them to specialists for treatment and management (Steingart 2008). In conclusion, many organizations provide a variety of services for individuals infected, affected and at risk for hepatitis C in Waterloo Region. However, as outlined in the HCV Strategy Report (Steingart 2008), many gaps in services do exist in this region, providing an opportunity to explore strategies to improve hepatitis C services and consequently health outcomes for individuals infected, affected or at risk for hepatitis C. #

11 Methods A situational assessment was conducted to examine future direction for improving hepatitis C services in Waterloo Region. A situational assessment examines the legal and political environment, stakeholders, the health needs of the population, the literature and previous evaluations as well as the overall vision for the project. It encourages considering the strengths of and opportunities for individuals and communities (MOHLTC 2008). The project was managed by Region of Waterloo Public Health and AIDS Committee of Cambridge, Kitchener, Waterloo and Area and funded by the Public Health Agency of Canada (PHAC). Research activities and report development was guided by a steering committee. The Steering Committee represents the intended audience and community partners from Region of Waterloo Public Health, Sanguen Health Centre and ACCKWA. The Steering Committee was involved in the planning, data gathering and report dissemination stages. In addition, two community peer consultants with awareness of local hepatitis C-related services and issues were involved with project development. This study has received research ethics approval from Region of Waterloo Public Health. Data Gathering Two methods were used to gather data: individual questionnaires with people infected, affected, and at risk for HCV and focus groups with service and healthcare providers. A review of literature was also conducted to provide background to the topic area and support any findings. Data gathering tools were developed and approved by the Steering Committee and pilot tested with ten participants (five male and five female) from the target population. Questionnaires: Participants who are infected, affected and at risk for HCV Participants were recruited from all municipalities within Waterloo Region in an attempt to reach a broad spectrum of the target population. Purposeful recruitment occurred at locations where at risk populations may frequent, including: sexually transmitted infection (STI) testing clinics, soup kitchens, homeless shelters, addiction support groups, addiction treatment centres, and community health centres. Individuals invited to complete the questionnaires were: members of one or more of the high risk groups for hepatitis C such as people who inject drugs, sex workers, homeless and precariously housed individuals, street involved youth, immigrant populations from hepatitis C endemic countries, and people who have been formerly incarcerated; members of one or more of the high risk groups for hepatitis C that were aware or were not aware of their current hepatitis C status; 16 years and older; and currently living, or lived within the past year, in Waterloo Region for at least three months. Recruitment activities included: displaying posters in high traffic public areas, service agencies, primary care offices, and community health centres; connecting with individuals through service providers; word of mouth through other participants; and direct outreach from the Hepatitis C Outreach Practical Support Worker at ACCKWA. Participants were also given a monetary incentive for completion of the questionnaire. One individual administered all questionnaires to ensure that participants did not complete more than one questionnaire. #

12 Questions (Appendix A) pertained to participant demographics, hepatitis C knowledge, risk behaviours, previous testing for HCV, services used, difficulties accessing services, and preference for receiving hepatitis C information. Focus Groups: Service/ Healthcare Providers Four focus groups were conducted with invited service and healthcare providers with representation from all municipalities in Waterloo Region. Focus groups were two hours in length with up to six participants in each group. An employee that currently provides a service to individuals that are infected, affected or at risk for hepatitis C was eligible to participate in the focus groups. This includes programs or services intended to prevent or treat HCV or provide support for hepatitis C related issues to persons living in Waterloo Region. Mailed letters and follow-up s and telephone calls were used to recruit for the focus groups. Service and healthcare providers representing the following groups in Waterloo Region were invited to participate: AIDS Committee of Kitchener, Waterloo, Cambridge and Area Ontario Works Cambridge Memorial Hospital Emergency Department Private addiction counsellors Cambridge Shelter - The Bridges Ray of Hope Canadian Mental Health Association Reaching Our Outdoor Friends Conestoga College Health Services Region of Waterloo Police Department Local physicians (gastroenterologists) Region of Waterloo Public Health Grand River Hospital Salvation Army New Directions Grand River Withdrawal Management Sanguen Health Centre House of Friendship St. John s Kitchen Kitchener Downtown Community Health Centre The Working Centre Kitchener-Waterloo Multicultural Centre University of Waterloo Health Services KW Counselling Wilfrid Laurier University Health Services Langs Farm Community Health Centre Woolwich Community Health Centre Ministry of Community Safety and Correctional Services Probation Officers YMCA Newcomers Program Mosaic Counselling YWCA- Mary s Place Ontario Addiction Treatment Centres Kitchener and Cambridge Focus group questions (Appendix B) were related to clients knowledge of hepatitis C, existing hepatitis C services in Waterloo Region, strengths of services, barriers to accessing and providing services, models of care, and opportunities for improving hepatitis C services in Waterloo Region. The same questions were asked at each focus group. One facilitator conducted all focus groups, and one project team member took all notes from each focus group. Data Management and Analysis Results from the questionnaires were entered into an SPSS database. Variables were created for each question on the questionnaire. Frequencies were run for each variable. Cross-tabulations for potentially relevant findings were also conducted. The following cross-tabulations were calculated: City by services used City by difficulties accessing services Been previously tested by risk behaviour Gender by services used Gender by difficulties accessing services Been previously tested by gender Been previously tested by services used Gender by services desired Been previously tested by housing Age by services used City by services desired Been previously tested by city Age by difficulties accessing services Age by services desired Been previously tested by age Gender by risk behaviours Age by risk behaviours City by risk behaviours Been previously tested by difficulties accessing services Focus group responses were captured in Microsoft Word. All responses were listed under each question, and summary themes from the responses were created under each focus group question. #

13 Results A total of 149 questionnaires were completed with persons infected, affected or at risk for hepatitis C. Service and healthcare providers from 12 organizations in Waterloo Region were represented at the focus groups. Population Characteristics A diverse group of individuals infected, affected or at risk for hepatitis C completed the questionnaires (Table 3). Males comprised of a greater proportion compared females (61 per cent vs. 38 per cent). Age composition was proportionate (range, to 60-69), with those aged 30 to 49 representing the majority (64 per cent) of the participants. Most of the participants lived in Kitchener (52 per cent) with 17 per cent residing in Waterloo, and 11 per cent from Cambridge. Three per cent of participants were from one of the rural townships. Many individuals indicated that they lived in their own place (52 per cent), and 30 per cent noted that they were staying in a shelter or did not have a fixed address. The majority of participants were born in Canada (85 per cent). Other countries of birth ranged across the globe (El Salvador, Cuba, Mexico, Nicaragua, United States, United Kingdom, France, Germany, Hungary, Italy, Poland, Portugal, Nigeria, and Zimbabwe). The majority of participants engaged in at least one risk behaviour for hepatitis C. Relating to the use of equipment, 27 per cent indicated they shared needles for injecting drugs, while 58 per cent of the participants shared pipes when smoking drugs or received a homemade tattoo or piercing (46 per cent). Half (51 per cent) have previously been incarcerated, while 60 per cent have lived on the street. Relatively few questionnaire participants have had sex for money or drugs (17 per cent), had a blood transfusion before 1992 in Canada (15 per cent), or received medical care outside of North America (11 per cent). Approximately half (52 per cent) of the participants had indicated that have been previously tested for hepatitis C. Table 3: Demographics, risk behaviour of questionnaire participants Per cent of Questionnaire Variable Participants Gender Male 61 Female 38 Age City Kitchener 52 Waterloo 17 Cambridge 11 Townships 3 Housing Own place 52 Shelter 15 No fixed address (streets) 15 Staying with friends/family 9 #

14 Per cent of Questionnaire Variable Participants Hospital 1 Born in Canada 85 Previously tested for hepatitis C Yes 52 No 44 Risk Factor Shared needles and supplies for injecting drugs 27 Shared pipes when smoking drugs 58 Had sex for money or drugs 17 Been in jail 51 Lived on the street 60 Gotten a homemade tattoo / piercing 46 Blood transfusion before 1992 in Canada 15 Received medical care outside North America 11 Knowledge about hepatitis C transmission by individuals infected, affected or at risk for hepatitis C was assessed using the individual questionnaires, and during discussion at the focus groups. Table 4 provides a summary of the results. The majority of participants indicated correctly that hepatitis C is an infection of the liver (61 per cent). Most also correctly identified how hepatitis C can be transmitted (range, 62 per cent to 87 per cent). Of interest is the finding that only 16 per cent of respondents correctly selected no symptoms as the main sign or symptom of hepatitis C. The results from the questionnaires are echoed by the comments from service and healthcare providers during the focus groups. Providers identified that some sub-groups of populations understand hepatitis C well. Those that have been previously counselled, were HCV-positive, were formerly incarcerated (where they may have received education), and those who knew peers with HCV were stated as knowing about hepatitis C. Providers indicated that few at risk populations were aware of the more specific details around transmission and prevention of hepatitis C. In particular, they stated that youth do not have much knowledge about hepatitis C and that prevention efforts should target younger generations. Providers did indicate, however, that knowledge about prevention of hepatitis C was greater than knowledge about transmission. They elaborated that prevention efforts are similar to those of other infectious diseases (such as HIV) and that many individuals find it easier to prevent everything together. Providers stressed that irregardless of the level of knowledge about prevention or transmission of hepatitis C, pertaining to injection drug users in particular, there are obstacles to behaviour change. Focus group participants indicated that at risk populations need to care about the issue to be able to change their risk behaviour. It was also noted that many factors beyond knowledge about hepatitis C influence one s decision to improve their behaviour. These factors include housing status, addiction, mental health and other broader determinants. As stated by one provider, they are overwhelmed by the day to day survival issues and do not think long-term. Table 4: Knowledge about hepatitis C among at risk populations in Waterloo Region Questionnaire Results Per cent of participants with correct answer Question Correct answer What is hepatitis C?* Infection of the liver 61 How can you get hepatitis C?* Blood to blood 87 Tattoos 56 Sharing razors and toothbrushes 62 What are some of the signs and symptoms of hepatitis C infection?* There are no symptoms 16 #

15 Focus Group Results Some sub-groups of people understand well. "Those aware of positive status; those that have been counselled; formerly incarcerated (educated in jail); healthcare providers; those who have friends with hepatitis C." Most at risk populations do not understand well. "There is not much middle ground. People who have been diagnosed are knowledgeable, most at risk do not know very much; Not well at all - at all ages have no idea." At risk youth do not have knowledge about Hepatitis C. "The youth are not as well educated as the older drug users; Prevention efforts should focus on youth. Knowledge about prevention is greater compared to knowledge about transmission of hepatitis C. "Most people take the same precautions to prevent HIV; Many find it easier to remember how to prevent everything together." Knowledge does not lead to behaviour change. "If they don't care, whether they understand is not relevant; they understand but getting high seems more important; knowledge is not the barrier; even if they understand, they take the risk to get their drug fix; there are blocks to behaviour change such as addiction, not valuing health, not seeing immediate harm; they are overwhelmed by day to day survival issues and do not think long-term." * Participants were given a choice of multiple answers The majority of cross-tabulations did not disclose any notable findings. It was revealed however, that those that have been tested for hepatitis C have used more services in the community (ROWPH, internet, family doctor, friends/family, support group, outreach services, community agencies, and healthcare centres). Not surprisingly, those that have not been tested indicated that they did not access any hepatitis C services in Waterloo Region (74 per cent of those that have not been tested did not use any services for hepatitis C information). Cross-tabulations also revealed that 55 per cent of questionnaire participants residing in Kitchener or Waterloo have been tested for hepatitis C. In comparison, only 38 per cent of participants living in Cambridge have been tested. Strengths of Hepatitis C Services in Waterloo Region Questions related to existing hepatitis C services in Waterloo Region were asked in the questionnaires and during the focus groups. Table 5 summarizes the questionnaire results related to hepatitis C services. Half of the questionnaire respondents indicated that they used the services of Region of Waterloo Public Health (56 per cent) or a family doctor (51 per cent) for information about hepatitis C. Over one-third of respondents also indicated using a healthcare centre or hospital (44 per cent), an outreach worker (37 per cent), the internet (36 per cent), family/friends (34 per cent) or community agencies (34 per cent) for hepatitis C information. Finally, 16 per cent of respondents did not access any services for information. Focus group participants identified various positive aspects about current hepatitis services available in Waterloo Region. A summary of focus group results is presented in Table 6. Providers indicated that current harm reduction services where available, are well received and working well. They specified that the needle exchange program in particular is effective and should be expanded. Current services provided through Sanguen Health Centre and ACCKWA were identified as strengths in Waterloo Region by focus group participants. Sanguen Health Centre specializes in Hepatitis B and C treatment, with Dr. Chris Steingart as the primary physician along with his healthcare provider team treating clients. ACCKWA is a non-governmental organization whose mandate is to provide prevention, education, advocacy and support programs/services to those infected, affected or at risk for HIV. Aspects about hepatitis C-related services that were praised include: providing a welcoming, non-judgemental and homey atmosphere, having knowledgeable, friendly providers, and the availability of anonymous services. #

16 ACCKWA in particular provides support services (counselling) and some transportation for clients, which are not available elsewhere in the community. Furthermore, focus group participants identified that services currently provided in Cambridge are a strong source of information and resources (including needle exchange) for the at risk population in Cambridge. The outreach services have also been well received, with providers indicating that these services are able to reach those who would otherwise not present themselves to the healthcare system. Outreach services were also noted by focus group participants to have been increasingly recognizable by the at risk population. Additional aspects of services working well in Waterloo Region include the provision of in-person services, and the availability of hepatitis C information from a variety of sources. Table 5: Hepatitis C Services in Waterloo Region Questionnaire Results Per cent of Questionnaire Variable Participants Services Used Previously for Hepatitis C Information Public Health 56 Family Doctor 51 Healthcare centre / hospital 44 Outreach worker 37 Internet 36 Family and friends 34 Community agencies 34 Support groups 20 None 16 Other (ACCKWA, detox, school, jail, self study) 6 Difficulties Accessing Hepatitis C Services None 32 Transportation 26 No ID / health card 22 No computer 17 Cost for service 15 Didn't know service was available 14 Hours of operation 13 Too embarrassed 12 Stigma 11 How hepatitis C Information Would Like to be Received Pamphlets 56 Healthcare provider 35 Flyers 34 Internet 34 Outreach worker 32 TV commercials 30 Workshops 28 Posters 26 Peer support 17 Information not wanted 8 Other (ACCKWA, any method, , family) 4 #

17 Barriers to Hepatitis C Services in Waterloo Region Questionnaire respondents indicated which difficulties they encountered when accessing hepatitis C services in Waterloo Region (Table 5). Approximately one third indicated that they had no difficulties accessing services (32 per cent) while a quarter noted transportation as a difficulty (26 per cent). Having no identification or health card (22 per cent) or no computer (17 per cent) accounted for some difficulties with access to hepatitis C services. Focus group providers felt that there were many barriers to accessing hepatitis C services experienced by their clients (Table 6). They noted that not having a treatment site in Cambridge posed significant hurdles, particularly related to transportation. The protocol to access treatment funding for clients from the Ministry of Health and Long- Term Care (MOHLTC) was also barrier. Clients are only able to be treated once in their lifetime for hepatitis C. Various factors influence one s readiness to pursue treatment, including the need to address other health concerns (addiction, mental health, other STIs, etc.). Also, the actual treatment is difficult for the patient as it is lengthy with side effects and therefore not desired by many clients. Focus group participants also noted that clients did not see the urgency to seek treatment without noticing symptoms for hepatitis C. Clients typically are not concerned about their health status until it becomes symptomatic which, in the case of HCV infection, can be many years or decades. Several barriers to the provision of services in Waterloo were identified during the focus groups (Table 6). Participants mentioned a lack of knowledge among potential hepatitis C providers in Waterloo Region on topics related to clinical practice as well as prevention. One participant identified the need to raise the profile of hepatitis C in the community to promote the issue as well as to decrease stigma related to addiction and mental health consequences. A large barrier to providing services was identified as the lack of formal support services for individuals infected, affected or at risk for hepatitis C. Providers mentioned a need for funded support services (counselling, social workers, psychiatrist, psychologists, etc.) to assist hepatitis C clients from prevention, to pre-treatment, during treatment, and after treatment (to prevent relapse). Focus group participants also mentioned inadequate prevention resources in Waterloo Region, particularly targeting sub-populations (youth, endemic populations, etc.). It was also pointed out however, that if prevention services in Waterloo Region do increase and more HCV cases are identified, there would be a need to also increase treatment services in the Region. Managing individuals infected, affected or at risk for hepatitis C was noted as a challenge for providers. Case management is difficult due to the multiple factors that contribute to their health status, resulting in missed medical appointments and non-compliance with treatment. Providers also indicated that the target population can be difficult to reach, noting language/cultural barriers, location, and the fact that the street- and drug-involved population are not within the healthcare system (many do not have family doctors). Lastly, as current hepatitis C services are not coordinated in Waterloo Region, providers stated that they are not aware of referral points to other services or the availability of other skills or resources in the community. Opportunities for Hepatitis C Services in Waterloo Region Questionnaire participants indicated their preferences for receiving information related to hepatitis C (Table 5). Many ideas for future direction of hepatitis C services in Waterloo Region were also discussed during the focus groups (Table 6). Over half (56 per cent) of questionnaire respondents specified that they would like to receive hepatitis C information from pamphlets. Approximately one third responded that they would like information provided by a healthcare #

18 provider (35 per cent), flyers (34 per cent), the internet (34 per cent), an outreach worker (32 per cent), TV commercials (30 per cent), or workshops (28 per cent). Only eight per cent of respondents indicated that they did not want hepatitis C information. Focus group participants identified an abundance of opportunities to improve hepatitis C services in Waterloo Region. Relating to service provision, they saw a need to increase formal support services specifically for hepatitis C clients. The creation of a peer support group for at hepatitis C clients specifically (at risk, current treatment clients, and post-treatment clients) was mentioned by several participants. This support group would comprise of those at risk for HCV due to injection or other drug use, street-involvement, and other risk behaviours, rather than due to blood transfusion. Furthermore, providers indicated the value in expanding treatment services. They mentioned that more physicians in Waterloo Region should specialize in hepatitis C treatment, potentially family practitioners. Outreach services have been well received and focus group participants saw potential in increasing outreach services or even linking with other organizations that currently provide outreach to integrate hepatitis C prevention. The focus group participants stressed that at risk hepatitis C clients, particularly street-involved individuals and IDUs, are comfortable in their own environment, giving credence to outreach as an effective strategy to target those individuals. It was also suggested that prevention services and resources relating to hepatitis C be increased. Targeted education, peer-to-peer education, and integration of prevention methods were identified as potential health promotion approaches. Similarly, advocacy efforts to create supportive policies (e.g. harm reduction housing) can be a technique to decrease stigma as well as to address the broader determinants that contribute to hepatitis C infection. A common theme discussed during focus groups was the value in providing one-stop services for hepatitis C clients. The predominant at risk population for hepatitis C typically presents multiple health concerns beyond HCV infection. Providing multiple services on-site allows for convenience of addressing other health issues, provides anonymity to client in terms of services being sought, and also enables continuity of care practices. Prevention, treatment and support providers and corresponding services were suggested to be housed in one location. For example, offering a general liver clinic was mentioned as one possibility for a one-stop shop model of care. Various working processes can also be put in place to improve hepatitis C service provision in Waterloo Region. Focus group participants stressed the importance of a coordinated regional approach to service provision. Having one regional support coordinator would dedicate time to the management of hepatitis C cases, and also connect providers. They identified a desire to connect with their hepatitis C provider counterparts, thereby enabling them the opportunity to network with one another, be aware of referral points and share resources, skills and knowledge. As previously mentioned, skill and knowledge development of service and care providers can be improved with regards to hepatitis C. Educating potential providers about hepatitis C could increase service capacity and also decrease stigma towards addiction and mental health issues. #

19 Table 6: Focus Group Summary of Hepatitis C Services in Waterloo Region Strengths in Waterloo Region Harm Reduction / Needle Exchange is available, well received and working well Sanguen Health Centre: o Welcoming atmosphere; non-judgemental, well-liked providers o Knowledgeable providers o Wait-list is not lengthy o Ad-hoc provision of support AIDS Committee of Cambridge Kitchener Waterloo & Area (ACCKWA) o Provision of support services and some transport for treatment clients o Referral to other services and information o Provision of services for Cambridge o Non-judgemental staff; anonymous services In-person services o Development of personal rapport with clients o Pre- and post-treatment counselling is effective Outreach o Recognizable by at risk population o Reaches those that otherwise would not seek services Provision of various sources of information Risk profiling works well can identify new clients Barriers to Accessing Services Protocol to access treatment funding from MOHLTC o Qualification only if client has fibrosis or liver function enzyme value 1.5 times normal. HCV is slow progressing and some would like treatment before it worsens. For many addicts, treatment for HCV is one of the last steps to battling addiction. o Treatment funded once only various factors impact client s readiness to successfully proceed Treatment is difficult lengthy, side effects Hepatitis C infection is asymptomatic for years diminishes urgency to seek treatment No treatment site in Cambridge Transportation to medical appointments (especially Cambridge) Lack of support services to encourage treatment Not having a health card (for some facilities) Internet and computer access is limited Stigma associated with addiction / injection drug use o Addiction issues under-funded o Health status of addicts minimized by providers and public Opportunities for Future Direction Central coordination of hepatitis C services o Regional support coordinator (case worker) can refer clients to appropriate services and also connect providers. One-stop: Multiple services on site (general liver clinic, other services) o Allows for: anonymity, continuity of care Networking for hepatitis C providers in Waterloo Region o Awareness of referral points; sharing of resources / knowledge / skills Provision/funding for support services (pre, post, during treatment) o No agency is mandated to provide support services o Support to manage other issues (housing, mental health, transportation, finances, translation) Create peer support group (past and current treatment patients) Provision of transportation to treatment: Volunteer or funded Increase prevention resources/services on hepatitis C specifically o Targeted education for those at risk (youth, cultural, IDU) o Peer to peer strategies are effective o Integrated prevention approach (for risk behaviours) o Education for general public (to decrease stigma) Increase services in Cambridge o No treatment services currently available o ACCKWA should be there 5 days a week (prevention) Professional development for service providers o To increase knowledge about hepatitis C o To be aware of referral points o To decrease stigma associated with at risk populations Expand outreach services o One practical support worker is not enough o Potential to link with other outreach workers o People are comfortable in their own environment Increase treatment providers (only one doctor currently in region) o Increase in family practitioners treatment specialization o Need for treatment will increase if prevention/education increases Advocacy for supportive policies o To address social determinants of health o To decrease stigma Barriers to Provision of Services Services are not coordinated providers not aware of referral points, existing skills/resources No funding for hepatitis C support providers (psychiatrist, psychologist, counsellor, social worker, outreach worker, case worker) Hepatitis C knowledge by providers is inadequate o Staying current with emerging research and practice is challenging Stigma associated with addiction / injection drug use o Health concerns minimized by some providers Harm reduction not supported by all stakeholders Inadequate treatment capacity to meet increasing demand if prevention services are improved Inadequate prevention resources o Targeting at risk youth o To educate healthcare providers o Various languages o On hepatitis C (distinguished from hepatitis A, B) Patient management is challenging o Multiple health factors to consider (addiction, mental health, other health issues) o Missed appointments o Unpredictable demands of services sought o Language/cultural barriers Client population is difficult to reach o Many not in healthcare system o Language/cultural barriers o Location / transportation o Gap in identifying endemic risk populations #