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Hepatitis C virus infection: impact on behaviour and lifestyle

Hepatitis C virus infection: impact on behaviour and lifestyle Northern Rivers Institute of Health and Research. Northern Rivers Area Health Service, New South Wales Abstract A cross-sectional study was conducted of persons notified with hepatitis C virus (HCV) infection on the NSW North Coast during 1993 and 1994.The personal impact epatitis C virus (HCV) is epidemic in Australia with approximately 10,000 new infections each year.’ Transmission is predominantly via blood, with shared drug injection equipment being the major exposure.2 Little is known about the impact of HCV on behaviour or circumstance of infected individuals. Media reports suggest community concern regarding bloodborne viruses (BBVs) such as HCV, compounded by negative stereotyping of injecting drug users (IDUs). We report on the impact of HCV infection on behaviour, treatment choices and lifestyle in people notified with HCV on the NSW North Coast. Methods Study methods have been described previo~sly.~ Briefly, all persons notified with HCV over a 21-month period during 1993 and 1994 were asked to complete a questionnaire examining exposures, therapies and behaviours. Subjects were asked specifically how their infection had influenced behaviours such as alcohol and tobacco intake, and personal circumstances such as relationships and working ability. Details of symptoms were requested on a separate questionnaire from attending medical practitioners with patients’ written consent. Results Knowledge of potential risk factors for HCV infection varied. Of 467 resident cases who responded, 321 (69%) were aware of potential exposures. Of 398 IDUs, 238 (60%) identified this as an exposure. Forty-three IDUs believed they were infected via other means, 34 did not know and 83 did not state how they were infected. Of 30 non-IDU transfusion recipients, 24 identified this as an exposure. Only 9 of 176 tattooed subjects stated this as a potential exposure. The major reported symptom was fatigue affecting some aspect of daily life, e.g. relaVOL. tionship, work, sleep (n=212; 45%). Some 182 (39%) also reported reduced ability to perform daily duties, 50 (1 1%) nausea and 77 (16%) emotional disturbances (e.g. stress, depression). There was no association between symptoms and hepatitis B virus coinfection (x2=0.21, df=l, p=0.65). Symptoms observed by medical practitioners were reported for a sub-sample of 2 19 subjects (1 17 male, 102 female): 78 (36%) reported fatigue, 47 (21 %) nausea, 46 (21 %) abdominal pain, 28 (13%) loss of appetite, 14 (6%) vomiting, and 7 (3%) jaundice. Fifty-nine (27%) were asymptomatic. Many subjects (n=338; 72%) reported no treatment for HCV, many having not so far returned since diagnosis. Twelve (3%) had used interferon, 37 (8%) anti-emetics, 34 (7%) pain relief and 15 (3%) sedatives. A variety of complementary therapies were also trialed (Table 1). Other steps to improve health included stress management, exercise, reduced alcohol/drug intake, yoga, meditation and counselling. Many people reported n o change in circumstance due to their infection. Others reported negative effects on physical and mental health, and social interaction (Table 2). Reports of isolation and discrimination related to community concern about HCV, stereotyping of people with H C V and adverse media portrayal of the disease. Respondents had concerns about commencing relationships, HCV infection having ended relationships, introduced fear and/or tension, and decreased sexual contact. Financial situation was closely related to subjects’ functional capacity. Fatigue, insomnia and nausea adversely affected working ability. Discrimination, stress and isolation at work were reported. Some 324 subjects (69%) were current smokers (cf. 25% of the adult North Coast p ~ p u l a t i o nand a further 103 were ex-smok)~ ers. Fifty subjects had cut down and eight of infection was investigated using a self-administered questionnaire. Many cases were currently well, however nearly half reported fatigue and other adverse physical/mental/social outcomes were noted. Tobacco use by subjects was high. People with HCV infection require continued support via appropriate screening, referral and treatment services; access to information;and countering community discrimination, stereotyping and concern about HCV. (Aust NZJPublicHealth 1998; 509-1 22: 1) Correspondenceto: Tim J. Sladden, Northern Rivers Institute of Health and Research, NSW Health Department, PO Box 498, Lismore, NSW 2480. Fax: (02) 6622 2151, e-mail: tslad@doh.health.nsw.gov.au 22 NO. 4 AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH Sladden et al. Brief Report Table 1:Complementary HCV treatments reported. Treatment Naturopathy Anti-nausea Analgesia Homoeopathy Dandelion root St Mary’s thistle Interferon Acupressure IV Vitamin C Frequency (%)” 48 (10.3) 37 (7.9) 34 (7.3) 22 (4.7) 2 (4.5) 1 16 (3.4) 12 (2.6) 8 (1.7) 7 (1.5) Period since last injection (years) Ozone Chinese herbs Rest Other treatment 5 (1.1) 3 (0.6) 3 (0.6) 22 (4.7) 337 (72.4) Note Pencd since last injection not stated for 132 of 398 lDUs Figure 1:Period since last injected drugs (years) NSW North Coast HCV study IDU respondents (1993-94). No treatment Note: (a) Percentages tally to more than 100 due to multiple treatments. had given up due to their HCV infection. Two hundred and ninetydrank alcohol (cf. 75% of the adult North Coast eight subjects (64%) p~pulation)~ 153 (33%) were ex-drinkers; 136 (46% of current and drinkers) had moderated their intake and 72 (47% of ex-drinkers) had given up due to HCV infection. Thirty-one men and 19 women reported binge drinking in the last month. Some positive impacts of infection included safer sex practices, care with blood spills and personal items (e.g. toothbrushes). Dietary improvements included reduced fat, sugar and coffee, and increased fruit and vegetable intake. Decreased appetite and nausea limited food variety for some. Discussion Few studies have examined population-based samples of HCV cases. This study included all cases notified on the NSW North Coast over a 21-month period. Communication with clinicians indicated a broad range of reasons for testing (i.e. not just symptomatology), thus cases probably reflected the pool of HCV in the community. The period between diagnosis and study participation was at least three months, with a mean period since diagnosis of 11 months. Responses may thus reflect the impact of infection more than the initial shock of diagnosis. Subjects completed an anonymous questionnaire that may have encouraged truthful reporting. While it was not derived from previously validated instruments, it was piloted and consisted mainly of tickbox, non-leading responses. While ‘lifestyle’ is a complex concept, with multiple, interactir influences, this study asked direct questions about the impact of HCV on various activities. As such, it gives some indication about the effect of HCV on personal circumstance. Further work is required to tease out inter-relationships between specific behaviours and to validate the findings as no control group was assessed. The low response rate (47% of resident cases), probably reflected community perceptions about BBVs and difficulties conducting community surveys.The significant age difference between respondents and non-respondents, with a lower proportion of younger cases responding, was perhaps due to increased mobility of younger subjects or higher rates of IDU in this age group. Many respondents reported deterioration in circumstance and well-being. Tobacco use was high. This could relate to the lifestyle associated with infection. Alternatively diagnosis of infection, compounded by stigmatisation sensed by many subjects, may have increased usage. For others, HCV had motivated positive changes in lifestyle to reduce liver damage or generally improve health. Many subjects had reduced or ceased alcohol intake. Improved diet and increased exercise levels were also reported. Experimenting with complementary therapies was common. Many IDUs had not injected in the past five years (Figure l), indicating that much HCV infection is due to past drug use. Current IDUs shared less than ex- Table 2: Impact of HCV on personal circumstance. Circumstance No Change Relationship: Type of change: Frequency (%) Worsened Improved 75 (16.1) 52 ( 1 .l) 1 106 (22.7) 182 (39.0) OtherlNot stated 48 (10.3) 39 (8.4) 26 (5.6) 24 (5.1) 27 (5.8) 30 (6.4) - with partner - with household Financial situation Functional caDaciW Fatiaue Diet 324 (69.4) 358 (76.7) 326 (69.8) 254 (54.4) 212(454) 225 (48.2) 20 (4.3) 18 (3.9) 9 (1.9) 7 (1.5) 16 (3.4) 117 (25.1) 212 (45.4) 95 (20.3) Note: (a) Ability to perform Uai/ytasks (work,home duties, etc). AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH VOL. 22 NO. 4 Brief Report Hepatitis C virus infection: impacts on behaviour and lifestvle IDUS, indicating increased awareness and the impact of needle and syringe exchange programs3 A need for further education of general practitioners regarding HCV has previously been identified.6Currently, efforts are underway in Australia to improve integration of GP and specialist services, update GPs and other health care workers on HCV management, improve patient access and shift demand away from specialist clinics. This, in turn, should enable more focused care on patients with symptomatic or advanced disease. Information and support services such as state Hepatitis C Councils require continued support to assist people with HCV to live as healthy a lifestyle as possible. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Australian and New Zealand Journal of Public Health Wiley

Hepatitis C virus infection: impact on behaviour and lifestyle

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Publisher
Wiley
Copyright
Copyright © 1998 Wiley Subscription Services, Inc., A Wiley Company
ISSN
1326-0200
eISSN
1753-6405
DOI
10.1111/j.1467-842X.1998.tb01423.x
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Abstract

Northern Rivers Institute of Health and Research. Northern Rivers Area Health Service, New South Wales Abstract A cross-sectional study was conducted of persons notified with hepatitis C virus (HCV) infection on the NSW North Coast during 1993 and 1994.The personal impact epatitis C virus (HCV) is epidemic in Australia with approximately 10,000 new infections each year.’ Transmission is predominantly via blood, with shared drug injection equipment being the major exposure.2 Little is known about the impact of HCV on behaviour or circumstance of infected individuals. Media reports suggest community concern regarding bloodborne viruses (BBVs) such as HCV, compounded by negative stereotyping of injecting drug users (IDUs). We report on the impact of HCV infection on behaviour, treatment choices and lifestyle in people notified with HCV on the NSW North Coast. Methods Study methods have been described previo~sly.~ Briefly, all persons notified with HCV over a 21-month period during 1993 and 1994 were asked to complete a questionnaire examining exposures, therapies and behaviours. Subjects were asked specifically how their infection had influenced behaviours such as alcohol and tobacco intake, and personal circumstances such as relationships and working ability. Details of symptoms were requested on a separate questionnaire from attending medical practitioners with patients’ written consent. Results Knowledge of potential risk factors for HCV infection varied. Of 467 resident cases who responded, 321 (69%) were aware of potential exposures. Of 398 IDUs, 238 (60%) identified this as an exposure. Forty-three IDUs believed they were infected via other means, 34 did not know and 83 did not state how they were infected. Of 30 non-IDU transfusion recipients, 24 identified this as an exposure. Only 9 of 176 tattooed subjects stated this as a potential exposure. The major reported symptom was fatigue affecting some aspect of daily life, e.g. relaVOL. tionship, work, sleep (n=212; 45%). Some 182 (39%) also reported reduced ability to perform daily duties, 50 (1 1%) nausea and 77 (16%) emotional disturbances (e.g. stress, depression). There was no association between symptoms and hepatitis B virus coinfection (x2=0.21, df=l, p=0.65). Symptoms observed by medical practitioners were reported for a sub-sample of 2 19 subjects (1 17 male, 102 female): 78 (36%) reported fatigue, 47 (21 %) nausea, 46 (21 %) abdominal pain, 28 (13%) loss of appetite, 14 (6%) vomiting, and 7 (3%) jaundice. Fifty-nine (27%) were asymptomatic. Many subjects (n=338; 72%) reported no treatment for HCV, many having not so far returned since diagnosis. Twelve (3%) had used interferon, 37 (8%) anti-emetics, 34 (7%) pain relief and 15 (3%) sedatives. A variety of complementary therapies were also trialed (Table 1). Other steps to improve health included stress management, exercise, reduced alcohol/drug intake, yoga, meditation and counselling. Many people reported n o change in circumstance due to their infection. Others reported negative effects on physical and mental health, and social interaction (Table 2). Reports of isolation and discrimination related to community concern about HCV, stereotyping of people with H C V and adverse media portrayal of the disease. Respondents had concerns about commencing relationships, HCV infection having ended relationships, introduced fear and/or tension, and decreased sexual contact. Financial situation was closely related to subjects’ functional capacity. Fatigue, insomnia and nausea adversely affected working ability. Discrimination, stress and isolation at work were reported. Some 324 subjects (69%) were current smokers (cf. 25% of the adult North Coast p ~ p u l a t i o nand a further 103 were ex-smok)~ ers. Fifty subjects had cut down and eight of infection was investigated using a self-administered questionnaire. Many cases were currently well, however nearly half reported fatigue and other adverse physical/mental/social outcomes were noted. Tobacco use by subjects was high. People with HCV infection require continued support via appropriate screening, referral and treatment services; access to information;and countering community discrimination, stereotyping and concern about HCV. (Aust NZJPublicHealth 1998; 509-1 22: 1) Correspondenceto: Tim J. Sladden, Northern Rivers Institute of Health and Research, NSW Health Department, PO Box 498, Lismore, NSW 2480. Fax: (02) 6622 2151, e-mail: tslad@doh.health.nsw.gov.au 22 NO. 4 AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH Sladden et al. Brief Report Table 1:Complementary HCV treatments reported. Treatment Naturopathy Anti-nausea Analgesia Homoeopathy Dandelion root St Mary’s thistle Interferon Acupressure IV Vitamin C Frequency (%)” 48 (10.3) 37 (7.9) 34 (7.3) 22 (4.7) 2 (4.5) 1 16 (3.4) 12 (2.6) 8 (1.7) 7 (1.5) Period since last injection (years) Ozone Chinese herbs Rest Other treatment 5 (1.1) 3 (0.6) 3 (0.6) 22 (4.7) 337 (72.4) Note Pencd since last injection not stated for 132 of 398 lDUs Figure 1:Period since last injected drugs (years) NSW North Coast HCV study IDU respondents (1993-94). No treatment Note: (a) Percentages tally to more than 100 due to multiple treatments. had given up due to their HCV infection. Two hundred and ninetydrank alcohol (cf. 75% of the adult North Coast eight subjects (64%) p~pulation)~ 153 (33%) were ex-drinkers; 136 (46% of current and drinkers) had moderated their intake and 72 (47% of ex-drinkers) had given up due to HCV infection. Thirty-one men and 19 women reported binge drinking in the last month. Some positive impacts of infection included safer sex practices, care with blood spills and personal items (e.g. toothbrushes). Dietary improvements included reduced fat, sugar and coffee, and increased fruit and vegetable intake. Decreased appetite and nausea limited food variety for some. Discussion Few studies have examined population-based samples of HCV cases. This study included all cases notified on the NSW North Coast over a 21-month period. Communication with clinicians indicated a broad range of reasons for testing (i.e. not just symptomatology), thus cases probably reflected the pool of HCV in the community. The period between diagnosis and study participation was at least three months, with a mean period since diagnosis of 11 months. Responses may thus reflect the impact of infection more than the initial shock of diagnosis. Subjects completed an anonymous questionnaire that may have encouraged truthful reporting. While it was not derived from previously validated instruments, it was piloted and consisted mainly of tickbox, non-leading responses. While ‘lifestyle’ is a complex concept, with multiple, interactir influences, this study asked direct questions about the impact of HCV on various activities. As such, it gives some indication about the effect of HCV on personal circumstance. Further work is required to tease out inter-relationships between specific behaviours and to validate the findings as no control group was assessed. The low response rate (47% of resident cases), probably reflected community perceptions about BBVs and difficulties conducting community surveys.The significant age difference between respondents and non-respondents, with a lower proportion of younger cases responding, was perhaps due to increased mobility of younger subjects or higher rates of IDU in this age group. Many respondents reported deterioration in circumstance and well-being. Tobacco use was high. This could relate to the lifestyle associated with infection. Alternatively diagnosis of infection, compounded by stigmatisation sensed by many subjects, may have increased usage. For others, HCV had motivated positive changes in lifestyle to reduce liver damage or generally improve health. Many subjects had reduced or ceased alcohol intake. Improved diet and increased exercise levels were also reported. Experimenting with complementary therapies was common. Many IDUs had not injected in the past five years (Figure l), indicating that much HCV infection is due to past drug use. Current IDUs shared less than ex- Table 2: Impact of HCV on personal circumstance. Circumstance No Change Relationship: Type of change: Frequency (%) Worsened Improved 75 (16.1) 52 ( 1 .l) 1 106 (22.7) 182 (39.0) OtherlNot stated 48 (10.3) 39 (8.4) 26 (5.6) 24 (5.1) 27 (5.8) 30 (6.4) - with partner - with household Financial situation Functional caDaciW Fatiaue Diet 324 (69.4) 358 (76.7) 326 (69.8) 254 (54.4) 212(454) 225 (48.2) 20 (4.3) 18 (3.9) 9 (1.9) 7 (1.5) 16 (3.4) 117 (25.1) 212 (45.4) 95 (20.3) Note: (a) Ability to perform Uai/ytasks (work,home duties, etc). AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH VOL. 22 NO. 4 Brief Report Hepatitis C virus infection: impacts on behaviour and lifestvle IDUS, indicating increased awareness and the impact of needle and syringe exchange programs3 A need for further education of general practitioners regarding HCV has previously been identified.6Currently, efforts are underway in Australia to improve integration of GP and specialist services, update GPs and other health care workers on HCV management, improve patient access and shift demand away from specialist clinics. This, in turn, should enable more focused care on patients with symptomatic or advanced disease. Information and support services such as state Hepatitis C Councils require continued support to assist people with HCV to live as healthy a lifestyle as possible.

Journal

Australian and New Zealand Journal of Public Health – Wiley

Published: Aug 1, 1998

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