Quality of Life Among People Living with Chronic Hepatitis ... · Ms Dottie St Clair Gympie Hospital Health Service District Ms Marlene Lear Ms Mary Potter Hervey Bay Women’s Health

Quality of Life Among People Living with Chronic Hepatitis C Infection

Communicable Diseases Unit, Public Health Services

Queensland Health

Queens and Government

Quality of Life Among People Living with Chronic

Hepatitis C Infection

Queensland Health File Ref No: 0055-4757-034

April, 2003

Queensland Health Report, April 2003

NB Any results presented in this report should be interpreted in the context of the whole report.

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EXECUTIVE SUMMARY The purpose of this research project was to describe ‘quality of life’ (QoL) among people in Queensland who have chronic infection with the hepatitis C virus (HCV). The project follows exploratory qualitative work that was funded by the NH&MRC in 1999-2001. In this new phase, Queensland Health provided funding for a statewide survey. In addition, the Haemophilia Foundation of Australia contributed additional funds to support travel costs. In particular, Queensland Health asked us to examine associations between alcohol consumption and health, and to determine if the impact of living with Hepatitis C infection varied depending upon residence in rural or urban areas of the state. We completed quantitative face-to-face interviews with 188 people who are living with untreated, chronic HCV infection. Two thirds were male and most were aged over 40 years. Approximately two thirds of the sample was living in the Brisbane metropolitan area. Participants were also recruited from Cairns, Townsville, Mackay, Rockhampton, Bundaberg, Gympie, Toowoomba, Gold Coast and other centres. In general the findings regarding health problems are consistent with other research. Most people report a complex array of symptoms of poor physical and mental health and various social and economic consequences of infection. Subjective health-related QoL, as assessed by the Short -Form 36 questionnaire, was significantly poorer than that found among the age- and gender-matched Australian population on each of the eight subscales. We asked about 21 symptoms that might be related to HCV infection. The most common symptoms were physical tiredness (86%), irritability (75%), mental tiredness (70%), depression (70%), abdominal pain (68%), sleep problems (65%) and forgetfulness (65%). Among people who had these symptoms, the most severe (in order of severity rated on a 10 point visual analogue scale) were: sleep problems, physical tiredness, mental tiredness, depression, poor appetite and poor concentration. Together, these findings indicate that the majority of people with HCV suffer a general malaise with substantially reduced vitality; poor sleep; gastrointestinal problems and reduced cognitive functioning. Sixty-two percent of the participants identified specific clusters of symptoms that have unpredictable onset and duration. Despite these significant impacts, it should be noted that poor health and emotional functioning is not universal: over one third of participants did not report clusters of symptoms and approximately 20% reported either few symptoms (six or less) or few severe symptoms. Many individuals (72.7%) had at least one concurrent chronic medical condition such as arthritis, asthma, sinusitis and/or high blood pressure, so there remains uncertainty as to which subjective symptoms might be caused specifically by HCV infection. Misuse of alcohol poses serious risks to people with chronic viral hepatic infections. The picture that emerged was mixed. Overall, 36% of respondents said they didn’t drink at all in the first 3 months after diagnosis and about one in every four said they reduced their drinking. However, nearly 10% said that they drank more alcohol after initial diagnosis. The remaining 33% of respondents said that there had been no change following diagnosis. Males were significantly more likely than females to drink heavily and have problems reducing intake. Geographic location may be an important factor, especially in relation to the risks from alcohol consumption. People with HCV who lived in regional Queensland were significantly less likely than Brisbane residents to reduce or abstain from drinking, were less likely to feel “guilt or remorse” after drinking and less likely to say that a relative, friend or doctor had suggested they cut down on drinking. Finally, participants were asked about their psychological adjustment to HCV infection. Most people said they try to “fight the illness”. However, it appears that people living outside Brisbane were more “relaxed” about HCV infection. They were least likely to say that they try to fight the illness and reported less anxiety or worry about the infection. Overall it is clear that people with HCV in pre-treatment phases report significantly poorer health than the general Australian population. Although it is not possible to draw a causal link between infection and poor general health in this study, the findings in Queensland are consistent with a growing body of international research. There may be a special need for innovative health promotion programs for people living with HCV outside Brisbane, as they may be least likely to modify hazardous drinking patterns and to receive advice from others about how to maintain their health.



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ACKNOWLEDGEMENTS This report was prepared by Ms Carolyn Lang, Centre for Public Health Research, Queensland University of Technology (QUT), Dr Michael Dunne of the School of Public Health, QUT, and Dr Graeme Macdonald, Department of Medicine, The University of Queensland and Queensland Institute of Medical Research (QIMR). Other collaborators include Jeff Ward, Hepatitis C Council of Queensland, Professor Graham Cooksley, Royal Brisbane Hospital Research Foundation and Ms Lyndall Garrett, School of Population Health, The University of Queensland. We would like to acknowledge Queensland Health, Communicable Diseases Unit for their financial support, guidance and practical assistance. We would like to thank the following people who kindly gave their time to assist with the recruitment of eligible participants for the project and made available a room for the interviews. Brisbane Royal Brisbane Hospital

A/Prof Barbara Leggett Dr Georgia Hume Dr Kate Hudson Ms Mary Fenech Ms Caroline Taylor Queensland Haemophilia Centre at the Royal Brisbane Hospital Dr John Rowell Ms Morag McColm Ms Beryl Zeissink Ms Rebecca Begbie The Prince Charles Hospital Health Service District Dr John Patton

Prof John Saunders Ms Anna Cooney Mr Patrick Gallagher The Hepatitis C Council of Queensland Mr Jeff Ward Ms Ann Scott Logan Hospital Ms Gillian McManus



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Regional Queensland Bundaberg Base Hospital A/Prof Barbara Leggett

Dr Kees Nydham Ms Mary Fenech Ms Karen McWilliams Ms Karen McGill Mr Patrick Martin

Cairns Hospital Health Service District Dr Peter Boyd Ms Prue Harding Capricornia Youth Service, The Centre (Rockhampton) Ms Lyn Gartlin Gold Coast Hospital Dr George Ostopovich Ms Sue Sharman Ms Dottie St Clair Gympie Hospital Health Service District Ms Marlene Lear Ms Mary Potter Hervey Bay Women’s Health Centre Ms Mary Lafin Ms Sara Lane Nambour General Hospital Dr Nicola Weston Rockhampton Hospital Health Service District Ms Kalie Bloxsom Sunshine Coast Injectors Voice And Action group (SCIVAA) Ms Anne Fisher Toowoomba Hospital Health Service District Dr John Hooper Ms Peta Deppeler Townsville Hospital Health Service District Dr John Masson Mr Sean Keough Ms Leanne Stone



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TABLE OF CONTENTS EXECUTIVE SUMMARY................................................................................................................................................................2

ACKNOWLEDGEMENTS ...............................................................................................................................................................3

1. BACKGROUND........................................................................................................................................................................7

2. METHODS ............................................................................................................................................................................... 10

2.1 DATA COLLECTION...............................................................................................................................................................10 2.1.1 Instrument Development.......................................................................................................................................... 10 2.1.2 Sampling..................................................................................................................................................................... 11

2.2 DATA MANAGEMENT ...........................................................................................................................................................13 2.2.1 Data Processing........................................................................................................................................................ 13

VARIABLE DEFINITIONS..................................................................................................................................................................13

3. RESULTS ................................................................................................................................................................................. 14

3.1 PARTICIPANTS........................................................................................................................................................................14 3.1.1 Response Rate and Representativeness of Participants..................................................................................... 14 3.1.2 Duration of interview............................................................................................................................................... 14 3.1.3 Level of Education:................................................................................................................................................... 15 3.1.4 Source of Income....................................................................................................................................................... 15 3.1.5 Current Relationship................................................................................................................................................ 16 3.1.6 Country of birth,........................................................................................................................................................ 16 3.1.7 Location...................................................................................................................................................................... 16 3.1.8 Characteristics of HCV infection........................................................................................................................... 17 3.1.9 Co-morbid conditions............................................................................................................................................... 18

3.2 SELF-RATED GENERAL HEALTH...........................................................................................................................................20 3.3 SYMPTOMS POSSIBLY RELATED TO HCV INFECTION.......................................................................................................21

3.3.1 Prevalence of specific symptoms............................................................................................................................ 21 3.3.2 Sleep disturbance...................................................................................................................................................... 23 3.3.3 Symptoms and demographic characteristics........................................................................................................ 23 3.3.4 Symptom summary .................................................................................................................................................... 23

3.4 ALCOHOL CONSUMPTION.....................................................................................................................................................24 3.4.1 Current alcohol consumption................................................................................................................................. 24 3.4.2 Demographic associations with alcohol consumption....................................................................................... 25 3.4.3 Summary of alcohol use in people living with hepatitis C................................................................................. 25

3.5 MENTAL ADJUSTMENT TO HEPATITIS C INFECTION.........................................................................................................25

4. CONCLUSIONS ..................................................................................................................................................................... 26

5. REFERENCES ........................................................................................................................................................................ 27

6. APPENDIX............................................................................................................................................................................... 28

6.1 PUBLICATIONS.......................................................................................................................................................................28 6.2 CONFERENCE PRESENTATIONS............................................................................................................................................28

NH&MRC workshop, Melbourne Business School, November 2001 Oral presentation ............................................. 28 6.3 SEMINARS...............................................................................................................................................................................29 6.4 ABSTRACTS............................................................................................................................................................................30

6.4.1 3rd Australasian Conference on Hepatitis C Melbourne March 2002........................................................... 30 6.4.2 HIV/AIDS, Hepatitis C and Related Diseases Conference (May 2002).......................................................... 31 6.4.3 Australian Society of HIV Medicine – Sydney 2002........................................................................................... 32 6.4.4 Gastroenterological Society of Australia (October 2002)................................................................................. 33 6.4.5 American Association for the Study of Liver Disease 2003 .............................................................................. 34 6.4.6 Queensland Health Scientific and Medical Meeting (December 2002).......................................................... 35



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HEALTH AND WELL BEING .................................................................................................................................................36

2.1 IN GENERAL WOULD YOU SAY YOUR HEALTH IS: (CIRCLE ONE).....................................................................................36 2.2 COMPARED TO ONE YEAR AGO, HOW WOULD YOU RATE YOUR HEALTH IN GENERAL ................................................36 2.3 THE FOLLOWING ITEMS ARE ABOUT ACTIVITIES YOU MIGHT DO DURING A TYPICAL DAY. DOES YOUR HEALTH

NOW LIMIT YOU IN THESE ACTIVITIES? IF SO, HOW MUCH? A LITTLE? A LOT? OR NOT AT ALL?............................36 2.4 DURING THE PAST 4 WEEKS, HAVE YOU HAD ANY OF THE FOLLOWING PROBL EMS WITH YOUR WORK OR OTHER

REGULAR DAILY ACTIVITIES AS A RESULT OF YOUR PHYSICAL HEALTH?.....................................................................37 2.5 DURING THE PAST 4 WEEKS, HAVE YOU HAD ANY OF THE FOLLOWING PROBL EMS WITH YOUR WORK OR OTHER

REGULAR DAILY ACTIVITIES AS A RESULT OF ANY EMOTIONAL PROBLEMS (SUCH AS FEELING DEPRESSED OR ANXIOUS)? ..............................................................................................................................................................................37

2.6 DURING THE PAST 4 WEEKS, TO WHAT EXTENT HAS YOUR PHYSICAL HEALTH OR YOUR EMOTIONAL PROBLEM INTERFERED WITH YOUR NORMAL SOCIAL ACTIVITIES WITH FAMILY, FRIENDS, NEIGHBOURS, OR GROUPS?..........37

2.7 HOW MUCH BODILY PAIN HAVE YOU HAD DURING THE PAST 4 WEEKS? (CIRCLE ONE ONLY)...................................37 2.8 DURING THE PAST 4 WEEKS, HOW MUCH DID PAIN INTERFERE WITH YOUR NORMAL WORK (INCLUDING BOTH

OUTSIDE THE HOME AND HOUSEWORK?) [CIRCLE ONE ONLY]........................................................................................38 2.9 THESE QUESTIONS ARE ABOUT HOW YOU FEEL AND HOW THINGS HAVE BEEN WITH YOU DURING THE PAST 4

WEEKS. FOR EACH QUESTION, PLEASE GIVE THE ONE ANSWER THAT COMES CLOSEST TO THE WAY YOU HAVE BEEN FEELING. [SHOW CARD WITH RESPONSE CATEGORIES] ..........................................................................................38

2.10 HOW TRUE OR FALSE IS EACH OF THE FOLLOWING STATEMENTS FOR YOU?......................................................39 SYMPTOM CHECK LIST........................................................................................................................................................ 40

ALCOHOL CONSUMPTION.................................................................................................................................................. 41

MINI-MAC SCALE .................................................................................................................................................................... 43



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1. BACKGROUND

The NH&MRC estimates that 210 000 Australians have chronic hepatitis C infection, and that approximately 16000 acquire hepatitis C (HCV) infection annually. The majority of people living with this virus will not develop cirrhosis or life threatening complications of their infection, however their lives may be dramatically affected by symptoms referable to HCV. In 1999 we commenced a study of Quality of Life (QoL) in subjects living with chronic HCV infection. This qualitative research phase of the project made no assumptions about how HCV might affect QoL. Unstructured interviews were carried out with 22 individuals and 12 focus groups of 3-7 people (total N=75 people with chronic HCV infection; male =49, age 16 to 60 years). The sample was selected to be diverse and included participants from hepatology outpatient clinics, hepatitis-related community agencies, a male prison and a sexual health clinic. The time since initial diagnosis of HCV was between 1 to 10 years and since infection was 1 to 30 years. In order of the frequency with which these issues were discussed, the participants mentioned problems with physical function, psychological function, social problems, attitudes/discrimination and economic consequences. Across these five categories, there were 2 themes: Predictable symptoms: These included physical symptoms (fatigue, nausea, dietary fat intolerance, pruritus and abdominal pain) and psychological symptoms (depression, inability to concentrate, mental fatigue). Fatigue was the most serious, being mentioned in 33 of the 34 interviews. Uncertainties: A general feeling of uncertainty permeated each domain of life. Most debilitating was uncertainty about "Hep C attacks", which were described as intense bouts of fatigue and nausea, occasionally with intense perspiration and headaches and hypersensitivity to light or sound. Episodes lasted from hours to days, and were different from the ongoing problems of predictable physical symptoms. Uncertainty regarding transmissibility to loved ones was a major concern, not assuaged by advice about low risks. In the social domain, uncertainty regarding disclosure to family, co-workers and others was prominent. This qualitative approach determined that the impact of HCV on QoL is pervasive. Current research: From the data we identified two lines for further inquiry that we believed were best answered with quantitative research methods. The first was to explore in more depth the clinical characteristics of the symptoms identified in qualitative interviews. Following our identification of temporal clustering of symptoms in the qualitative research we have gone back to current literature on QoL in HCV infection and found no reference to these episodes. This presumably reflects a weakness of the instruments used in these studies as the occurrence of these episodes has been confirmed by the panel used in our qualitative research and on discussions with individuals living with hepatitis C held as part of the feedback of our research to this community. Feedback from many people with HCV infection and some carers strongly suggests that the occurrence of symptoms is not easily predicted or managed. However, it is necessary to conduct further research to verify the prevalence and characteristics of these in a broad cross-section of people with HCV infection, and to explore the relationships, if any, with other clinical and personal factors. A second interesting question emerged from the qualitative data. In most focus groups and one-to-one interviews, we found unprompted discussion of problems people face adjusting to physical, social and emotional uncertainties regarding HCV. There was considerable variability between individuals regarding the extent to which they feel ‘in control’ of their infection. Of course, problems in adjusting to illness or chronic infection are encountered in many other conditions. This has been described most comprehensively in factor analytic studies of ”mental adjustment” to significant illnesses including cancer (Greer & Watson, 1987; Pinder et al, 1994) and HIV/AIDS (Grassi et al, 1999; Kelly, Dunne, Raphael et al, 1991; Kelly et al, 2000). Greer and Watson (1987) found five major types of adjustment to cancer; Fighting spirit (ie. Personal commitment to fighting the disease, mostly through positive attitudes, faith and beliefs), Fatalism; Helplessness/hopelessness; Anxious pre-occupation and Avoidance. Subsequent studies of mental adjustment among people with HIV/AIDS have found slightly different factor structures (Grassi et al, 1999; Kelly, 1991 2000; Ross et al, 1994).



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Adjustment styles that appear universal to life threatening disease include “Fighting Spirit” and “Helplessness/Hopelessness”. However “Anxious pre-occupation” is not a prominent feature of living with HIV/Aids; rather an important dimension seems to be “Personal Control” (Grassi et al, 1999; Kelly et al, 2000) in which people actively attempt to use social networks for support and information so that they can control the quality of their lives (if not the progression of the disease). Variation among people is linked to their overall level of physical sickness (eg. hopelessness is greater among those who are in advanced disease stages). However, the strongest correlations are between mental adjustment scores and various measures of psychological morbidity, such as depression and social dysfunction (Kelly et al, 2000). In summary, the aims of the current research were to explore the generalisability of the symptoms attributed to hepatitis C, and to study psychological adjustment to chronic infection among volunteers recruited from hepatology outpatient clinics at the Royal Brisbane Hospital and in community groups. The three main research questions were: 1. What is the prevalence of symptoms among people living with chronic HCV infection

2. What are the characteristics of these symptoms and the clinical and personal factors that are

associated with their occurrence?

3. Does “Mental adjustment to HCV” (as measured by a quantitative scale) explain significant variation in subjectively measured quality of life, including levels of social functioning, emotional distress, pain, physical impairment and vitality?



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In addition, staff from Queensland Health requested that we pay particular attention to two factors:

1. Alcohol consumption patterns and associated problems among people with HCV, as this poses serious risks for complications such as cirrhosis.

2. Recruitment of people who live outside Brisbane, as most Australian and International research of people who have HCV infection to date is based on samples drawn from capital cities, and the situation for people in rural areas and non-metropolitan cities should be assessed.

This report will specifically detail: 1. Impairment of aspects of physical and mental wellbeing prevalent in individuals living with chronic

HCV infection 2. A systematic comparison of people in Brisbane and regional cities and towns 3. Alcohol consumption patterns among people with HCV.



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2. METHODS 2.1 Data Collection

2.1.1 Instrument Development

A detailed questionnaire to assess symptoms in people living with HCV was developed based on the results from the initial qualitative phase of this project. This instrument was piloted at the Hepatology Outpatient Clinics of the Royal Brisbane Hospital. Thirty-one treatment-naïve participants were interviewed (19 males, 12 females aged 22 to 62, median 42 years). Twenty-two were born in Australia, 19 had completed grade 12 or higher and 11 were employed or in business. As expected, symptoms varied considerably. The five most prevalent symptoms (from a panel of 21) in order were irritability, physical tiredness, depression, sleep problems and poor concentration. These were all present in two-thirds of the sample. Temporal symptom clustering occurred in 25 of the 31 people, with 5 having more than 2 identifiable symptom clusters. The 5 most prevalent symptoms in these clusters in order (and with number of counts) were mental tiredness (16), depression (16), sleep problems (15), irritability (14) and physical tiredness (12). The instrument included basic demographic questions to describe the study population. Our previous research identified alcohol as a significant trigger for some of the symptoms being evaluated, and so an assessment of this was included in the instrument. The Short Form 36 Questionnaire (SF-36) has been the most widely used instrument to assess the health-related QOL in people with HCV infection and was incorporated in the instruments used in our study. We compared our questionnaire with the SF-36 to assess how well this latter instrument identified impaired QoL. Mental adjustment was assessed using the MAC (Mental adjustment to Chronic Disease) in subjects with HCV infection. Fatigue and sleep disturbance were major symptoms described in the qualitative phase of the project. To better characterise these impairments, sleep quality was assessed with the Sleep Survey. In our pilot study at Hepatology Outpatients at the Royal Brisbane Hospital we were able to complete the interviews using these instruments in 40 to 60 minutes. Following this pilot study the instrument, particularly the components developed by us were modified to improve the clarity of questions and facilitate data entry for subsequent analysis. Once the final instrument was designed, approval for the study was sought and obtained from 13 separate Human Research Ethics Committees. It should be noted that obtaining approvals and managing the administrative requirements for the same project from multiple Ethics Committees involved a considerable commitment for the research officer employed on the study. These commitments had an impact on the number of interviews that that could be obtained with the study funding and during the time frame of the study.



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2.1.2 Sampling

In total we have interviewed 188 volunteers with untreated HCV. The sample is one of convenience as random sampling of people with HCV is not feasible. Our intention was to ensure that the sample is diverse; hence, we recruited people in numerous locations and services in rural and urban areas of Queensland. The volunteers have been recruited from the following locations;

Hospital and Health Service Districts § Bundaberg Hospital

- Hepatology outpatient clinic - Alcohol, Tobacco and Other Drug Services

- Q Clinic (Sexual Health clinic)

§ Cairns Base Hospital - Hepatology Outpatient clinic

§ Gold Coast Hospital Health Service District - Hepatology Outpatient clinic

- Alcohol Tobacco and Other Drugs

- Private Hepatology clinic – Dr George Osteopovich

§ Gympie Hospital Health Service District - Alcohol, Tobacco and Other Drug Services

§ Logan Hospital § Nambour Hospital

- Hepatology outpatient clinic

- Sexual Health clinic

§ Queensland University of Technology § Redcliffe and Caboolture Health Service District

- Community Health Clinic

§ Rockhampton Hospital Health Service District - No patients recruited

§ Royal Brisbane Hospital - Hepatology Outpatient Clinic

§ The Prince Charles Hospital Health Service District

- Needle and Syringe program, Biala - Sexual Health Clinic, Biala

- Methadone Clinic, Biala

§ Toowoomba Hospital Health Service District - Kobi House

• Needle and Syringe program • Sexual Health clinic

§ Townsville Hospital Health Service District - Hepatology Outpatient Clinic



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Community agencies

- Haemophilia Foundation Australia - Brisbane

- Tin Can Bay - Toowoomba

- Townsville

- Cairns - Malanda

- Northern Rivers

- Gold Coast - Sunshine Coast

- Hepatitis C Council of Queensland, Brisbane - Hervey Bay Women’s Health Centre

- Sunshine Coast IntraVenous Voice and Action group

- Maroochydore - Nambour

- Capricornia Youth Service, Rockhampton - The Centre, Needle and Syringe program

All participants were aged 18 years and over, proficient in English and able to provide informed consent for involvement. There is an excess of males as chronic HCV infection is more prevalent in men. Exclusion criteria included: lack of proficiency in English, unable to give informed consent, pregnancy, having a history of treatment for Hepatitis C infection and co-morbid viral infections such as HBV, HAV and HIV/AIDS.

Procedure All interviews were conducted by one interviewer (Carolyn Lang). Patient interviews were conducted in a private room to ensure confidentiality. Interviews were not tape-recorded). Records of interviews will be preserved in accordance with standard guidelines. Verification of positive HCV pathology was obtained for all participants De-identified data are maintained by the Research Officer (Carolyn Lang) on a password protected relational database at the Centre for Public Health Research, QUT, Kelvin Grove. Identifying details were stored separately on as password-protected database in a locked office of Dr Macdonald at the Dept of Medicine, University of Queensland, Clinical Sciences Building, Royal Brisbane Hospital.



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2.2 Data Management

2.2.1 Data Processing

Carolyn Lang entered de-identified data, with a 10% random sample of these being re-entered and verified. An error rate of 20 in 260,000 characters was well within acceptable limits. Prior to statistical analysis, the data files prepared for analysis were considered for data integrity. This consisted of (i) checking that no invalid codes were recorded for each questionnaire item and (ii) defining a series of consistency checks between questionnaire items to ensure cross-validity of responses. All dubious data were resolved by referral to the original study forms.

Variable Definitions

Location Postcodes were grouped by Brisbane and non-Brisbane postcodes. Gender The Gender variable was recoded into Male and Female, with the one Transgender participant excluded from all analyses. Symptom severity A continuous scale was used to assess the patient’s severity of symptoms. These were defined on a scale of 1 (Best you have felt) to 10 (Worst you have felt).



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3. RESULTS

3.1 Participants

3.1.1 Response Rate and Representativeness of Participants

Two hundred and fifty five individuals were approached to participate in the study (Male 165, Female 89, Transgender 1, see Table 1). All but seven agreed to participate when approached. Sixty participants (Male 36, Female 24) agreed to be interviewed and had these booked (usually at a time and place of their choosing) and did not appear on the day and could not be contacted again or subsequently declined to participate at an alternative time. Reasons for non-interview included: forgetfulness, commencing treatment, inability to arrange a time or place for the interview, telephone disconnected, illness, child-minding arrangements, and economic circumstances. The remaining 188 subjects (Male 125, Female 62, Transgender 1) completed the interview process. More than half were male (62%) and most were aged 40 years or over (64.9%).

Table 1: Participant Response rate

Interviews completed

N (%)

Refused N (%)

Did not appear to booked interview

N (%)

Total

Sex

Male 125 (66.5) 4 (57.1) 36 (60.0) 165 (64.7)

Female 62 (33.0) 3 (42.9) 24 (40.0) 89 (34.9)

Transgender 1 (0.5) 0 0 1 (0.4)

Total 188 (100.0) 7 (100.0) 60 (100.0) 255 (100.0)

Age group

<40 66 (35.1) 4 (57.1) 29 (48.3) 99 (38.8)

40+ 122 (64.9) 3 (42.9) 25 (41.7) 150 (58.8)

Age not available 6 (10.0) 6 (2.4)

Total 188 (100.0) 7 (100.0) 60 (100.0) 255 (100.0)

3.1.2 Duration of interview

The time taken to complete the interview (mean 53.6 minutes) did not vary significantly by gender (Males 52.0 minutes vs. Female 56.9 minutes) or age (<40 years 54.2 minutes vs. 40+ years 53.4 minutes).



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3.1.3 Level of Education:

Approximately half of the sample had not completed secondary school, while about one in seven had completed a bachelor degree or higher (Figure 1).

Figure 1 Level of Education

50.5%

16.0%

7.4%

10.6%

15.4%

Year 11 or under

Year 12 Senior

Trade/Apprenticeship

Certificate/Diploma

Bachelor or higher

3.1.4 Source of Income

More than half of the sample relied on pensions or government benefits, while a little more than a third earned wages or salary and nine percent owned or were in partnership in a business (Figure 2). Generally, this indicates that the average income of this sample is substantially lower than the average for adults in Queensland.

Figure 2 Source of Income Source of Income

No Income

Other Government Inc

Worker Compensation

Superannuation

Maintenance or child

Family Payment Allow

Disability Pension

Own business or part

Wage or Salary

Per

cent

40

30

20

10

0



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3.1.5 Current Relationship

Relationship status is shown in the pie chart (Figure 3). Approx 45% were married or living with a partner and about one in four were single/never married.

Figure 3 Current Relationship

28.7%

1.3%

14.0%

10.8%

15.9%

29.3% Single/Never married

Widowed

Divorced

Separated

Living with partner

Married

3.1.6 Country of birth,

The majority of the sample was born in Australia (80.2%), with 5.9% born in New Zealand, 6.4% the United Kingdom, 1.6% in Europe, 1.6% in Asia, and 4.3% elsewhere. Two (1.1%) participants were of Aboriginal or Torres Strait Islander descent. Less than 2% do not speak English at home

3.1.7 Location

One third of the sample lived outside of the Brisbane area (Table 2). Three people were excluded from location analyses as they resided in Northern New South Wales.

Table 2: Location, Metropolitan/ Non-metropolitan Queensland

N %

Metropolitan Qld. 115 61.2

Non-metropolitan Qld. 70 37.2 Total 185 98.4

Missing data 3 1.6 Total 188



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3.1.8 Characteristics of HCV infection

3.1.8.1 Probable duration of infection with Hepatitis C virus

Table 3 shows the year of diagnosis separately for people age less than 40 and those aged 40 or more. Overall, nearly one third of the sample had first been diagnosed within the preceding 3 years, while 57.5% were diagnosed during the 1990s. One in eight were diagnosed prior to 1990, and many of these were initially said to have “non-A, non-B” infection.

Table 3: Year Diagnosed with HCV or Non-A/non-B hepatitis

Age Sex <=1989 N (%)

1990-1999 N (%)

>=2000 N (%) Total

<40 years Male 4 (3.3) 19 (10.9) 14 (8.0) 37 (21.3)

Female 2(1.2) 14 (8.0) 7 (4.0) 23 (13.2)

40 + Male 11 (6.3) 46 (26.4) 20 (11.5) 77 (44.3)

Female 4 (3.3) 21 (12.1) 12 (6.9) 37 (21.3)

Total 21 (12.1) 100 (57.5) 53 (30.5) 174 (100.0)

3.1.8.2 Year first noticed symptoms related to Hepatitis C

Participants were asked to reflect on the time when they first noticed symptoms that may have been related to HCV infection. Several people indicated they had had symptoms for more than 30 years (See Figure 4), although for the majority the symptoms had first become apparent during the 1990s.

Figure 4 Year of onset of symptoms attributed to HCV infection

2002 2000

1998 1996

1994 1992

1990 1988

1985 1982

1980 1971

1955

Per

cent

20

10

0



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3.1.9 Co-morbid conditions

3.1.9.1 Other chronic condition present

The presence or absence of another chronic condition was ascertained in 157 of the interviews. As would be expected, participants over the age of 40 were significantly more likely to have at least one other chronic medical condition compared with those aged less than 40years (See Table 4, P=0.002, χ2). It should be noted that the presence of these co-morbidities could impact on health-related QOL, symptom profiles, sleep and mental adjustment to illness and so affect the results from other components of the instrument used in the current study, particularly in participants over the age of 40.

Approx one third of the sample had two or more chronic medical conditions in addition to HCV infection (Table 5). The specific other chronic conditions present are detailed in Table 6. The four most prevalent co-morbid conditions in our study population were (in descending order) arthritis, sinusitis, asthma and hayfever. The current study was not designed to determine if these conditions were more prevalent in patients with hepatitis C than in age- and sex-matched controls, and could therefore be related to the infection

Table 4: Presence of another Chronic Condition or Injury by Age group

Other Chronic condition present

Age N (%) Total

<40 years 40 + Yes 30 (56.6%) 83 (79.8%) 113 (72.0%)

No 23 (43.4%) 21 (20.2%) 44 (28.0%)

Total 53 104 157

Table 5: Number of Chronic Conditions present Number of chronic conditions present

N=157 N %

None 43 27.4 1 59 37.6

>=2 55 35.1 Total 157 100

Table 6: Prevalence of Other Chronic conditions present*

Symptom N % Anaemia 10 6.4

Arthritis 46 29.3 Asthma 21 13.4 Bronchitis 12 7.6 Emphysema 1 0.6 Hayfever 16 10.2 Hernia 8 5.1 Hypercholesterolaemia 4 2.5 Hypertension 15 9.6 Renal disease 5 3.2 Osteoporosis 6 3.8 Sinusitis 22 14.0 Stomach ulcers 15 9.6 Varicose veins 9 5.7 Other chronic illness/injury

34 21.7

* Note: Subjects could have more than one co-morbid condition



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3.1.9.3 Tobacco smoking

A question regarding smoking was inadvertently omitted from the first 31 interviews. Among the remaining 157 participants, 58% were current cigarette smokers, a figure that is more than double the rate (approx 25%) of the adult Queensland population.



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3.2 Self-rated general health

Subjective well-being was assessed with the Short-Form-36 questionnaire (appendix 6.5), which is a standardised measure of health-related “quality of life” used in numerous population-based surveys in Australia and internationally (including national health surveys conducted by the Australian Bureau of Statistics). In the following table (Table 7), the scores of 188 people with HCV infection on each of the eight SF-36 sub-scales are shown alongside data obtained from a national survey of Australians completed in 2000 (see Dunne et al, 2003; Purdie et al, 2002). The age-range of the national data has been, matched to the HCV sample.

Table 7 Comparison of scores on Short Form 36 Health-related Quality of Life domains in study population and matched results from Australian population

Study Sample Australian Population N Mean Std. Deviation Mean Std. Deviation

General Health 187 48.1 25.0 74.1 20.1

Vitality 187 42.9 24.9 64.6 19.8

Emotional Functioning 186 58.8 24.2 77.1 16.8

Physical Functioning 187 72.4 24.9 87.1 19.5

Social Functioning 188 57.5 32.0 82.9 22.9

Role-Physical 185 46.8 41.4 80.6 33.1

Role-Emotional 186 49.3 44.5 81.9 31.2

Body Pain 188 56.0 26.4 77.5 24.6

It is clear that mean scores of people with HCV infection on each of the SF-36 sub-scales are substantially lower than those found in the general population. The group differences exceed a standard deviation unit for all dimensions except body pain and physical functioning. This pattern has been observed in other studies of people with HCV infection. There were no significant differences in the health-related QOL (as assessed by the SF-36) in subjects living in Brisbane compared to those from outside the metropolitan area.



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3.3 Symptoms possibly related to HCV infection

3.3.1 Prevalence of specific symptoms

During the qualitative research phase, participants in focus groups and one-to-one discussions mentioned twenty-one symptoms that might be related to HCV infection. In the quantitative interviews in the current study, respondents checked yes or no to indicate whether they had recently experienced each symptom. If they indicated they experienced a symptom this was rated on a visual analogue scale from 1 (very mild) to 10 (extreme). Table 8 shows the prevalence (percent) for each of the symptoms from the most to least common, as well as the mean and median severity of symptoms. It should be noted that we did not ask the person to decide whether the symptoms were specifically related to HCV infection (symptom & severity profile- appendix 6.6).

Table 8 Prevalence of and severity of specific symptoms in subjects with HCV

Prevalence Severity

N* (%) Median

Physical Tiredness 161 85.6 7

Irritability 139 74.5 6

Depression 131 69.7 6

Mental Tiredness 130 69.7 7

Abdominal pain 127 68.1 6

Forgetfulness 123 65.4 5

Sleep problems 123 65.4 8

Joint pain 119 63.3 7

Poor concentration 116 61.7 6

General Body pain 107 56.9 6

Headaches 105 55.9 4

Muscle pain 101 53.7 6

Nausea 98 52.7 5

Poor appetite 93 50.0 6

Food Intolerance 90 47.9 5

Diarrhoea 88 46.8 4

Night Sweats 86 45.7 6

Day Sweats 79 42.0 4

Skin problems 77 41.5 6

Light sensitivity 71 37.8 5

Noise sensitivity 68 36.7 6

* Number of patients who reported having this symptom # Median severity of a symptom from 1-10 visual analogue scale



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These data confirm our clinical impression and the data from the qualitative phase of our research that individuals with HCV experience a variety of symptoms, and that these symptoms are frequently perceived as being of at least moderate intensity. In particular they highlight the potential importance of physical tiredness, irritability, depression, mental tiredness and abdominal pain as symptoms in people living with hepatitis C. These symptoms have been reported in previous studies of hepatitis C, but there has been little evidence about the prevalence and severity of these. In addition the study confirmed the existence of several previously unidentified symptoms in people living with HCV infection, including night sweats, day sweats, light sensitivity and noise sensitivity. The identification of these symptoms confirms the utility of the qualitative research approach utilised in the initial phase of this research. It is obvious from Table 9 that subjects must generally experience multiple symptoms. Very few people reported no recent symptoms (2.1%), which is not surprising since a number of these symptoms are general indicators of malaise that can occur in day-to-day life. Just over twenty percent said they had experiences six or fewer symptoms, while approximately double that number (39.9%) reported that they had 15 or more symptoms, indicating poor general health. The number of symptoms experienced by participants is shown in Table 10.

Table 10 The number of separate symptoms (as detailed in Table 9) experienced by subjects living with HCV

Number of Symptoms Frequency Percent

None 4 2.1 1 2 1.1 2 6 3.2 3 7 3.7 4 7 3.7 5 6 3.2 6 6 3.2 7 10 5.3 8 11 5.9 9 7 3.7

10 6 3.2 11 5 2.7 12 11 5.9 13 14 7.4 14 11 5.9 15 13 6.9 16 13 6.9 17 16 8.5 18 12 6.4 19 9 4.8 20 8 4.3 21 4 2.1

Total 188



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3.3.2 Sleep disturbance

The qualitative phase of this research identified sleep disturbances as a major cause of morbidity. To investigate the nature of sleep disturbances in people living with HCV, a sleep survey was included in the instrument used in the current study. This confirmed the high prevalence of sleep problems in our study population. In particular nearly 60% of respondents indicated they experienced satisfactory sleep never or only some of the time. Over a third of participants indicated that they felt only somewhat rested or not rested at all after a nights sleep, while over half of the subjects indicated they felt sleepy during the day either all of the time or most of the time.

3.3.3 Symptoms and demographic characteristics

Generally, women reported more symptoms than men, especially depression (83.9% women; 62.4% men), headaches (75.8% vs. 45.6%), mental tiredness (85.5% vs. 61.6%), physical tiredness (95.2% vs. 80.8%), forgetfulness (75. 8% vs. 60%), sensitivity to light (56.5% vs. 28.8%), sensitivity to noise (50% vs. 30.4%), food intolerance (62.9% vs. 40.8%), nausea (64.5% vs. 47.2%) and day sweats (53.2% vs. 36.8%). None of the 21 symptoms were more prevalent in men. (for the Symptom & severity profile see appendix 6.6). There were few differences in symptoms profiles between those under or over 40 years of age, except that younger people reported higher rates of nausea, irritability and light sensitivity. In relation to sleep problems, these were significantly more important in women and those subjects less than 40 years of age. People in Brisbane and non-Brisbane locations generally reported similar symptoms, although those in rural locations reported more joint pain and muscle pain than did those living in Brisbane. One interesting regional difference, however, is that people in Brisbane (69%) were significantly more likely to report that clusters of symptoms occurred together than did people in rural areas (52.2%).

3.3.4 Symptom summary

The current study has provided information about the prevalence and severity of a variety of symptoms including sleep disturbances in people living with HCV. While a number of these symptoms have been previously described in relation to HCV infection, the quantitative data acquired in the current study in relation to these symptoms is unique. The current study has also confirmed data from our earlier work regarding the importance of sleep problems and previously unrecognised symptoms in these subjects. However, the current study is not able to determine if these symptoms are a direct consequence of HCV infection or a reflection of otherwise shared host factors (such as a history of injecting drug use) or co-morbid medical conditions. Further investigation will be necessary to identify the host and virological factors (if any) associated with these symptoms.



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3.4 Alcohol consumption

3.4.1 Current alcohol consumption

Questions regarding current alcohol consumption were included in 157 interviews. 29.3% of these participants did not consume alcohol in the previous 12 months. Figure 5 shows the pattern of alcohol consumption in the 12 months prior to the subjects interview with Ms Lang, while Figure 6 shows the changes in alcohol consumption in the three months after hepatitis C was diagnosed. Figure 5 Pattern of alcohol consumption in the 12 months prior to interview

4 or more times per

2-3 times per week

2-4 times per month

Monthly or less

Never

Per

cent

40

30

20

10

0

Figure 6 Alcohol consumption in the 3 months after diagnosis of hepatitis C

I didn't drink

The same

Less than before

More than before

Per

cent

40

30

20

10

0

In general the people in this sample were moderate consumers of alcohol compared to normal drinking levels of Australian adults. Figure 5 demonstrates this, although as can be seen, a significant proportion of subjects drank 2 or more times per week. For example, 26.4% of the participants aged less than 40 years said they consume seven or more drinks on a typical drinking occasion and most of these individuals said they do this at least weekly, with approximately eight percent admitting to daily heavy drinking.



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Figure 6 demonstrates that the majority of subjects either drank no alcohol (36%) or reduced their alcohol (24%) after a diagnosis of hepatitis C was made. Although the methods of assessing alcohol intake are not identical in Figures 5 and 6, at least a small proportion of subjects (6.7%) have resumed drinking compared to their intake immediately after diagnosis of hepatitis C

3.4.2 Demographic associations with alcohol consumption

As was expected based on previous studies, females were less likely to drink hazardous amounts of alcohol than males. Fifty six percent of the females and 47.5% of the men said they never drink alcohol or do so monthly or less, while 27.4% of the men but only 6% of the women with HCV drank alcohol on four or more days per week. Again as expected, older people tended to drink less than the young. An interesting pattern emerged when we examined responses to questions about alcohol among people in Brisbane and non-metropolitan areas. Although the prevalence of abstinence was equivalent in metropolitan (18.4%) and non-metropolitan Queensland (20.9%), people with HCV in Brisbane were more likely to say they had cut down the amount of alcohol consumed following the diagnosis of HCV (36.8%) compared to people outside Brisbane (19.4%). Nearly half of the non-metropolitan sample (47.8%) said there had been no change in the drinking patterns following diagnosis. We compared the responses of people from metropolitan and non-metropolitan Queensland to questions from the AUDIT instrument (Allen et al, 2001) (appendix 6.7) used to evaluate factors related to alcohol consumption. People outside Brisbane were much less likely than their Brisbane counterparts to ever feel guilt or remorse after drinking (22.2% versus 39.4%). Further, nearly two thirds of the subjects from regional Queensland (65.7%) said that no relative, friend or doctor had ever suggested they cut down drinking, compared to less than half (47.1%) of those in the city. Overall, it is important to note that of the full sample, 55% indicated that no one had ever suggested they cut down on drinking.

3.4.3 Summary of alcohol use in people living with hepatitis C

The majority of participants in the current study were light drinkers or abstainers. However, a minority drank at hazardous levels. In general, subjects from metropolitan Queensland had modified their alcohol consumption following the diagnosis of HCV. There was some evidence that this may relate to differences in the attitudes to alcohol consumption in Brisbane and regional centres in Queensland. This offers a potential target for intervention regarding alcohol consumption in non-metropolitan Queensland.

3.5 Mental Adjustment to hepatitis C infection

We used a modification of the “Mental Adjustment to Cancer Scale” (Greer and Watson, 1987) (Appendix 6.8) to assess participants’ psychological reactions to chronic infection. These data are currently being analysed. For this report, we compared the data from each item for people who lived in Brisbane or outside Brisbane. In general, there were no significant regional differences. However, subjects from Brisbane were more likely to indicate that they “try to fight the illness”, while those living outside Brisbane were significantly more likely to “… not worry about having hepatitis C”.



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4. CONCLUSIONS

In conclusion, the research process employed in the current study was successful in engaging a broad range of individuals living with hepatitis C in metropolitan and regional Queensland. Subjects were recruited at multiple sites, representing a diverse cross-section of people living with HCV. Although almost 200 subjects were recruited into the study, a major limitation for the study was the need to submit an identical research protocol to Human Research Ethics Committees at multiple Queensland Health Public Hospitals. A centralised process for the approval of this study would have improved the efficiency in terms of recruiting more subjects.

The data collection, entry and verification for this project were completed in February 2003. As a consequence analysis of the data has not been finalised. At this stage we can say that in general the results with regard to health-related QOL are similar to research at other centres, with global impairments across all domains as measured by the SF-36. The novel findings of the study relate to the data regarding the prevalence and severity of symptoms and sleep disturbance in people living with hepatitis C infection, and the data on mental adjustment to HCV. These data need further analysis. In particular we are planning a factor analysis of both the symptom data and the mental adjustment data to attempt to identify broad factors that can be used in subsequent studies. At this stage our group has a PhD student and a Master of Public Health working on these detailed analyses. At this stage we are interested in factors that relate to symptoms and symptom clustering, and the relationship between symptoms and mental adjustment to HCV. Future plans building on this data include an assessment of the relationship between symptoms (including sleep disturbance) and host and virological factors and an in depth analysis of the symptom clustering, described as “hep C attacks” by a participant in the qualitative phase of this research. At this stage it is apparent that a number of participants have multiple symptoms that are of moderate severity at least. Women were more likely to admit to symptoms, and when present, these were generally assessed as more severe. There was little relationship between the age of participants and prevalence of symptoms, despite older patients having more co-morbid conditions. In general the data with respect to symptoms from participants who lived in regional Queensland were similar to those from metropolitan subjects. It should be emphasised that a substantial minority of people have relatively few and minor symptoms, with little if any symptom clustering, suggesting that Health Promotion materials and messages emphasising negative outcomes are not appropriate. The data with respect to alcohol consumption in the study population appeared generally encouraging; with most subjects indicating their alcohol consumption was modest. There was a minority of participants who appeared to have hazardous alcohol consumption, and this is of concern with regard to progression of liver disease, as well as the other impacts of hazardous alcohol on wellbeing. In terms of specific steps to address hazardous alcohol consumption, it appeared that the message with respect to the risks of alcohol consumption for people with HCV should be emphasised in non-metropolitan Queensland. In the near future we hope to have several manuscripts for submission to peer-reviewed journals relating to the in depth analysis of the data. We also plan to continue the studies and submit applications for further support from national and international funding agencies. An important component of the project will be to disseminate the results of this study back to the community. When approved by Queensland Health, we would like to send copies of this report to all collaborating agencies. In addition we hope to maintain the rapport we have established with Community Groups so that the project can be ongoing and we are in the process of planning presentations to several of these groups. In particular experience presenting at a number of meeting has demonstrated that people living with HCV are particularly interested in data relating to symptoms. In summary, this project has contributed significantly to our understanding of the impact of HCV infection on QOL generally and in Queensland specifically. The QOL Project will build on the data collected and networks established in the current study to try and identify the host and virological factors that contribute in impaired QoL in subjects living with hepatitis C infection.



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5. REFERENCES

Allen, J. P., D. F. Reinert, et al. . The Alcohol Use Disorders Identification Test: An Aid to Recognition of Alcohol Problems in Primary Care Patients. Preventive Medicine, 2001, 33(5): 428-433. Grassi L, Righi R, Makoui S, Sighinolfi L, Ferri S, Ghinelli F. Illness behavior, emotional stress and psychosocial factors among asymptomatic HIV-infected patients. Psychotherapy and Psychosomatics, 1999; 68:31-38. Greer, S. & Watson, M. Mental adjustment to cancer; its measurement and prognostic importance Cancer Surveys, 1987; 6:439-453 Kelly, B., Dunne, M.P., Raphael, B., Smith, S., Statham, D. & Zournazi, A. Relationships between mental adjustment to HIV diagnosis, psychological morbidity and sexual behaviour. British Journal of Clinical Psychology, 1991, 30, 370-372. Kelly B, Burnett P, Judd F, Raphael B, Dunne MP, Perdices M, Kernutt G, Burrows G Measuring psychological adjustment to HIV infection. International Journal of Psychiatry in Medicine, 2000, 30 (1), 41-59. Pinder KL, Ramirez AJ, Richards MA, Gregory WM. Cognitive responses and -psychiatric disorder in women with operable breast cancer. Psycho-Oncology, 1994; 3: 129-137. Ross MW, Hunter CE, Condon J. The mental adjustment to HIV scale: measurement and dimensions of response to AIDS/HIV disease. AIDS care, 1994; 6: 407-411. Ware,J.E., and Sherbourne, C.D. The Medical Outcomes Stud (MOS) 36-item short-form health survey. Medical Care, 1992 30, 473-483



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6. APPENDIX

6.1 Publications

Conrad, S., Dunne, M., Macdonald, G. 2001. Quality of life, in Hepatitis C: An Australian Perspective. Crofts, N., Dore, G., Locarnini, S. (Eds.), Melbourne: IP Communications. Garrett, L. & Conrad, S. 2001. Quality of life: are people living with chronic hepatitis C getting enough? Australian Hepatitis Chronicle, 8:March. Conrad, S., Macdonald, G., Garrett, L., Cooksley, W.G.E, Dunne, M., 2000. Quality of life in chronic hepatitis C infection, Gastroenterology and Hepatology, 15: Supp. J82.

6.2 Conference presentations

Queensland Health Medical and Scientific Meeting – December 2002- Oral presentation MP Dunne, GA Macdonald, CA Lang, LE Garrett, J Ward, WGE Cooksley, Quality of Life among people living with chronic hepatitis C infection Australasian Gastroenterology Week – Adelaide October 2002 – Poster Macdonald GA, Lang CA, Garrett LE, Cook MD, Williams HF, Cooksley WGE, Dunne MP. Quality of life in hepatitis C infection: a profile of symptoms

Australian Society of HIV Medicine –Sydney May 2002 – Oral presentation

Garrett LE, Macdonald GA, Cooksley WGE & Dunne MP The reasons and consequences behind HCV disclosure and concealment

HIV/AIDS, Hepatitis C & Related Diseases (HHARD) Conference, Sydney 2002 - Oral Presentation Garrett L, Lemon G, Lang C, Conrad S, Dunne M, Macdonald G, Cooksley G, Ward J. Translating the lived experience to living resources: Hepatitis C and Quality of Life. 3rd Australasian Conference on Hepatitis C Melbourne March 2002 – Oral presentation Macdonald GA, Garrett LE, Lang CA, Cooksley WGE, Dunne MP. Quality of life in hepatitis C infection: a profile of symptoms NH&MRC workshop, Melbourne Business School, November 2001 Oral presentation

Dunne MP, Macdonald GA, Cooksley WGE, Garrett LE, & Conrad S Quality of Life among people living with chronic hepatitis C infection

Australasian Gastroenterology Week – Hobart October 2000 Poster Macdonald GA, Garrett LE, Conrad S, Williams HF, Cooksley WGE, Dunne MP. Quality of life in hepatitis C infection 2nd National Workshop for hepatitis C Educators - Brisbane October 2000 - Oral presentation Conrad S Uncertain Realities: Quality of life among people living with chronic hepatitis C Dr Michael Dunne has been invited to speak at the Dental and Oral Health Therapists Association conference in May 23-24 2003. "Effects of chronic hepatitis C infection on quality of life". Dr Graeme Macdonald had been invited to speak at the Haemophilia Foundation Australia Conference on the Gold Coast in October 2003



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6.3 Seminars

Hervey Bay Womens Health Centre, September 2002 Ms Carolyn Lang Quality of Life among people living with chronic Hepatitis C infection Biala-Queensland Health, August 2002 Dr Michael Dunne Psychological Adjustment to Chronic Hepatitis C infection Mackay Sexual Health Clinic, August 2002 Ms Carolyn Lang Quality of Life among people living with chronic Hepatitis C infection-Results and feedback from the qualitative phase

Seminars in Alcohol and Drug Studies, June 2002 Conrad S Hepatitis C: Piecing together the quality of life puzzle, Sunshine Coast Injectors Voice And Action, June 2002, August 2002 Ms Carolyn Lang Quality of Life among people living with chronic Hepatitis C infection Haemophilia Foundation Australia, May 2002 Dr Graeme Macdonald Quality of Life among people living with chronic Hepatitis C infection - Hepatitis C Council of Queensland, May 2002 Dr Graeme Macdonald Hanoi School of Public Health, Vietnam, October 2000 Dunne MP Qualitative Research into hepatitis C infection

Victorian Community Hepatitis C Conference, Melbourne 2000 Conrad S Uncertain Realities: Quality of life among people living with chronic hepatitis C,

Australian Health Promotion Association Breakfast Seminar Brisbane 2001 Conrad S Quality of life among people living with chronic hepatitis C,



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6.4 Abstracts

6.4.1 3rd Australasian Conference on Hepatitis C Melbourne March 2002

QUALITY OF LIFE IN HEPATITIS C INFECTION: A PROFILE OF SYMPTOMS. GA Macdonald1, LE Garrett2, MD Cook2, WGE Cooksley3, MP Dunne2. 1Dept. of Medicine, Uni. of Qld. and Div. of Population and Clinical Sciences, QIMR; 2School of Public Health, QUT; 3CRC, RBH Research Foundation, Brisbane, Qld. Background: Our previous qualitative research with 75 individuals with chronic hepatitis C (HCV) identified a complex pattern of physical, psychological and social consequences. In particular, there appears to be identifiable clusters of symptoms with unpredictable onset and duration that interrupt normal daily function. Aim: To extend these observations to a broader sample of people. Methods: Face-to-face structured interviews (approx. one hour duration) examined physical and psychological symptoms, and used generic instruments to assess health-related quality of life (SF36), sleep quality (Sleep Quality Index) and mental adjustment (Mental Adjustment to HCV infection). Results: To date 31 treatment-naïve participants have been interviewed (19 males, 12 females aged 22 to 62, median 42 years). Twenty-two were born in Australia, 19 had completed grade 12 or higher and 11 were employed or in business. As expected, symptoms varied considerably. The five most prevalent symptoms (from a panel of 21) in order were irritability, physical tiredness, depression, sleep problems and poor concentration. These were all present in two-thirds of the sample. Temporal symptom clustering occurred in 25/31 people, with 5 having >2 such clusters. The 5 most prevalent symptoms in these clusters in order (and with number of counts) were mental tiredness (16), depression (16), sleep problems (15), irritability (14) and physical tiredness (12). Conclusions: The data support our initial finding that there are identifiable clusters of psychological and physical symptoms characteristic of chronic HCV infection. With further data collection, analysis will focus on associations between these phenomena and other measures.



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6.4.2 HIV/AIDS, Hepatitis C and Related Diseases Conference (May 2002)

Translating the Lived Experience to Living Resources: Hepatitis C and Quality of Life Lemon, G 1., Garrett, L 2., Lang, C 1., Conrad, S 3., Dunne, M 1., MacDonald, G 4., 1 Centre for Public Health Research, Queensland University of Technology 2 HIV/HCV Education Project, School of Medicine, The University of Queensland 3 Centre for Drug and Alcohol Studies, The Prince Charles Hospital Health Service District, Brisbane, Queensland 4 Department of Medicine, The University of Queensland and the Division of Population and Clinical Sciences, Queensland Institute of Medical Research and Royal Brisbane Hospital Approximately one percent of the Australian population is infected with hepatitis C (HCV). Whilst symptomology of infection has been explored, there has been a dearth of work that specifically addresses psychological and social affects of living with the virus. A quality of life (QoL) study conducted through the Queensland University of Technology, Centre for Public Health Research sought to further understand this complex issue through semi structured interviews with hepatitis C positive individuals and focus groups. A number of themes emerged from this research, with a key topic being a sense of uncertainty related to infection. Symptoms included mental and physical fatigue, nausea, headaches and upper right quadrant pain, and individuals who reported these symptoms were prone to depression and more likely to perceive infection with HCV as a life threatening condition. Infection with HCV had a pervasive impact on an individual’s quality of life, ranging from social stigma, lack of concise information about the virus and the ambiguity associated with prognostic outcomes. During the analysis it became apparent that people had identified strategies to limit the impact of HCV on their QoL. In particular a number of participants had devised strategies to improve life quality. A Queensland University of Technology Community Service Grant provided the impetus for developing a resource that could discuss some of the concerns highlighted by the research. The resource presents lifestyle advice and suggests coping strategies for dealing with quality of life impairments related to hepatitis C and is also based on published research. This paper looks at how qualitative research can be translated into a useful community resource tool.



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6.4.3 Australian Society of HIV Medicine – Sydney 2002

The reasons and consequences behind HCV disclosure and concealment Garrett LE, Macdonald GA, Cooksley WGE, & Dunne MP The Enquiry into Hepatitis C related Discrimination (Anti-Discrimination Board of NSW, 2001) identified disclosure as the main theme associated with discrimination. In spite of this, the reasons people disclose or conceal their HCV status are unclear. In a large HCV qualitative study conducted by the QUT School of Public Health Research, 12 focus groups and 22 one-to-one interviews were conducted across a variety of hospital and community agencies throughout Queensland including a Public hospital S100 treatment clinic, a ATODS clinic, Sexual Health Services, a Haemophilia Support Group, a male Prison, the Hepatitis C Council of QLD, Brisbane Youth Services, and QuiVAA. 75 people with Hepatitis C participated in the study (51 were males) and all interviews were transcribed verbatim before analysis. Although not specifically inquired into, three themes relating to disclosure emerged including 1) whom people select to disclose or conceal their HCV status, 2) the reasons for disclosure and concealment, and 3) consequences of disclosure or concealment. People were more likely to disclose to close friends and long-term partners for comfort and understanding, although the development of an intimate relationship was problematic for some because of the fear of rejection. Spontaneous or unplanned disclosure often occurred, particularly at work or health care setting where there was a perceived risk of blood exposure. Unplanned disclosure seemed more likely to bring about discrimination and rejection. Planned targeting of friends and family could provide support and acceptance.



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6.4.4 Gastroenterological Society of Australia (October 2002)

Quality of life in hepatitis c infection: a profile of symptoms GA Macdonald1, CA Lang2, LE Garrett2, MD Cook 2, HF Williams3, WGE Cooksey4, MP Dunne2

1Department of Medicine, The University of Queensland and the

Division of Population and Clinical Sciences, QIMR 2School of Public Health, Queensland University of Technology

3Infectious Diseases Unit, Queensland Health 4Clinical Research Centre, RBH Research Foundation, Brisbane, Qld.

Background: Our previous qualitative research with 75 individuals with chronic hepatitis C (HCV) identified a complex pattern of physical, psychological and social consequences of infection (JGH 2000, 15(Suppl):J82). In particular, sleep disturbance was a common problem and in some subjects symptoms appeared to cluster in relation to specific triggers. Our aim of the current research was to extend these observations in a broader sample of people. Aim: To extend these observations in a broader sample of people. Methods: Face to face structured interviews (approx. one hour duration) examined physical and psychological symptoms and used generic instruments to assess health related quality of life (SF36), sleep quality (Sleep Quality Index) mental adjustment (Mental Adjustment to HCV infection). Results: To date interviews with 31 treatment-naïve participants have been analysed (19 males, 12 females aged 22 to 62, median 42 years). Twenty-two were born in Australia, 19 had completed grade 12 or higher and 11 were employed or in business. As expected, symptoms varied considerably. The six most prevalent symptoms in order were irritability, physical tiredness, depression, sleep problems, poor concentration and mental tiredness. These symptoms were present in =2/3 of participants. Temporal clustering occurred in 25people. The 5 most prevalent symptoms in these clusters in order were mental tiredness, depression, sleep problems, irritability, and physical tiredness. Twenty-three subjects had identified triggers for the onset of symptom clusters, particularly stress/worry and inadequate sleep. Five subjects had 3 or more distinct symptom clusters. Most participants slept =7 hours per night. However sleep was disturbed, with nearly a quarter waking >5x/night. Once awake, most subjects remained so for >10 minutes. Although 19 subjects had had at least one nap in the preceding week, only 2 subjects had felt refreshed by these. Conclusions: These data support our initial finding that there are identifiable clusters of psychological and physical symptoms with identifiable triggers in subjects with HCV. They also highlight poor sleep quality as a major contributor to the profile of symptoms associated with HCV infection.



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6.4.5 American Association for the Study of Liver Disease 2003 Submitted – not accepted

QUALITY OF LIFE IN HEPATITIS C INFECTION: A PROFILE OF SYMPTOMS. GA Macdonald1, LE Garrett2, MD Cook2, H Williams3, WGE Cooksley4, MP Dunne2. 1Dept. of Medicine, Uni. of Qld. and Div. of Population and Clinical Sciences, QIMR; 2School of Public Health, QUT; 3Communicable Diseases Unit, Qld. Health, 4CRC RBH Research Foundation, Brisbane, Qld. Background: Our previous qualitative research with 75 individuals with chronic hepatitis C (HCV) identified a complex pattern of physical, psychological and social consequences of infection (JGH 2000, 15(Suppl):J82). In particular, sleep disturbance was a common problem and in some subjects symptoms appeared to cluster in relation to specific triggers. Aim: To extend these observations in a broader sample of people. Methods: Face-to-face structured interviews (approx. one hour duration) examined physical and psychological symptoms from a panel of 21 identified in the qualitative phase of this project, and used generic instruments to assess health-related quality of life (SF36), sleep quality (Sleep Quality Index) and mental adjustment (Mental Adjustment to HCV infection) Results: To date interviews with 31 treatment-naïve participants have been analysed (19 males, 12 females aged 22 to 62, median 42 years). Twenty-two were born in Australia, 19 had completed grade 12 or higher and 11 were employed or in business. As expected, symptoms varied considerably. The six most prevalent symptoms in order were irritability, physical tiredness, depression, sleep problems poor concentration and mental tiredness. These symptoms were present in ≥2/3 of participants. Temporal symptom clustering occurred in 25 people. The 5 most prevalent symptoms in these clusters in order were mental tiredness, depression, sleep problems, irritability and physical tiredness. Twenty-three subjects had identified triggers for onset of symptom clusters, particularly stress/ worry and inadequate sleep. Five subjects had 3 or more distinct symptom clusters. Most participants slept ≥7 hours per night. However sleep was frequently disturbed, with nearly a quarter waking ≥5×/ night. Once awake, most subjects remained so for >10 minutes. Although 19 subjects had had at least one nap in the preceding week, only 2 subjects had felt refreshed by these. Not surprisingly poor sleep quality was significantly associated with physical tiredness and poor concentration. Conclusions: These data support our initial finding that there are identifiable clusters of psychological and physical symptoms with identifiable triggers in subjects with HCV. They also highlight poor sleep quality as a major contributor to the profile of symptoms associated with HCV infection.



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6.4.6 Queensland Health Scientific and Medical Meeting (December 2002)

Quality of life AMONG PEOPLE WITH CHRONIC hepatitis c infection

MP Dunne, GA Macdonald, CA Lang, LE Garrett, J Ward, WGE Cooksley, School of Public Health, Queensland University of Technology

Purpose of Study: People living with Hepatitis C Virus (HCV) infection experience a complex pattern of physical, psychological and social consequences. Our prior qualitative research with 75 HCV+ people found that symptoms appeared to cluster in time, and these ‘episodes’ may arise in reaction to specific triggers. We aim to examine these observations in a broader sample of people. Study Population: To Sept 2002 we have interviewed 102 treatment-naïve people with chronic HCV infection, recruited through liver clinics, community agencies and Drug and Alcohol services in Brisbane, Gold Coast, Sunshine Coast, Toowoomba, Bundaberg, Rockhampton, Mackay and other centres Methods: Face to face structured interviews including the SF36, “Sleep Quality Index”, and “Mental Adjustment to HCV infection”. Results: To date interviews with 87 individuals have been analysed (57 males, 30 females aged 22 to 62, median 42 years). 74% were born in Australia and 78% were employed. As expected, symptom types and severity vary considerably. Most prevalent symptoms in order were physical tiredness, irritability, depression, abdominal pain, mental tiredness, sleep problems and poor concentration.. Temporal clustering occurred for 80% of participants, and most could identify triggers for the onset of clusters, such as inadequate sleep, heavy alcohol consumption and workplace stress. We identified four types of psychological adjustment to HCV infection and these are similar to adjustment styles in people living with cancer or HIV infection. Conclusions: People with HCV have identifiable clusters of symptoms with identifiable triggers. Poor sleep quality in particular is a major contributor to these problems.


Section Two Health and Well Being

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HEALTH AND WELL BEING SF-36 This section asks you about your health at the moment.

2.1 In general would you say your health is: (circle one)

1. Excellent 2. Very Good 3. Good 4. Fair 5. Poor

2.2 Compared to one year ago, how would you rate your health in general now? (circle one)

1. Much better than a year ago 2. Somewhat better than a year ago 3. About the same as one year ago 4. Somewhat worse than one year ago 5. Much worse than one year ago

2.3 The following items are about activities you might do during a typical day.

Does your health now limit you in these activities? If so, how much? A little? A lot? Or Not at all? (circle one number on each line)

Activities Yes,

limited a lot

Yes, limited a

little

No, not limited at

all

A Vigorous Activities, such as running, lifting heaving objects, participating in strenuous sports

1 2 3

B Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling or playing golf

1 2 3

C Lifting or carrying groceries 1 2 3

D Climbing several flights of stairs 1 2 3

E Climbing one flight of stairs 1 2 3

F Bending, kneeling or stooping 1 2 3

G Walking more than one kilometre 1 2 3

H Walking half a kilometre 1 2 3

I Walking 100 metres 1 2 3

J Bathing and dressing yourself 1 2 3



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2.4 During the past 4 weeks, have you had any of the following problems with

your work or other regular daily activities as a result of your physical health? (circle one number on each line)

Have you……

Activities Yes No

A Cut down on the amount of time you spent on work or other activities 1 2

B Accomplished less than you would like 1 2

C been limited in your kind of work or other activities

1 2

D Had difficulty performing your work or other activities (for example, it took extra effort) 1 2

2.5 During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)? (circle one number on each line)

Have you……

Activities Yes No

A Cut down on the amount of time you spent on work or other activities

1 2

B Accomplished less than you would like 1 2

C Been less able to do your work or other activities as carefully as usual

1 2

2.6 During the past 4 weeks, to what extent has your physical health OR your emotional problem interfered with your normal social activities with family, friends, neighbours, or groups? (circle one)

Has it interfered……

1. Not at all 2. Slightly 3. Moderately

4. Quite a bit 5. Extremely

2.7 How much bodily pain have you had during the past 4 weeks? (circle one

only)

Have you had……

1. None 2. Very mild 3. Mild

4. Moderate 5. Severe 6. Very severe



38

2.8 During the past 4 weeks, how much did pain interfere with your normal

work (including both outside the home and housework?) [circle one only]

Has it interfered…….

1. Not at all 2. A little bit 3. Moderately

4. Quite a bit 5. Extremely

2.9 These questions are about how you feel and how things have been with

you during the past 4 weeks. For each question, please give the one answer that comes closest to the way you have been feeling. [show card with response categories]

How much of the time during the past 4 weeks…

All of the

time

Most of the time

A

good bit of the

time

Some of the time

A

little of the time

None of the time

A Did you feel full of life? 1 2 3 4 5 6

B Have you been a very nervous person?

1 2 3 4 5 6

C Have you felt so down in the dumps that nothing could cheer you up?

1 2 3 4 5 6

D Have you felt calm and peaceful?

1 2 3 4 5 6

E Did you have a lot of energy? 1 2 3 4 5 6 F Have you felt down? 1 2 3 4 5 6

G Did you feel worn out? 1 2 3 4 5 6

H Have you been a happy person?

1 2 3 4 5 6

I Did you feel tired? 1 2 3 4 5 6

2.9.1 During the past 4 weeks, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting friends, relatives etc)?

Did it interfere……

1. All of the time 2. Most of the time 3. Some of the time

4. A little of the time 5. None of the time



39

2.10 How TRUE or FALSE is each of the following statements for you?

Definitely True

Mostly True

Don’t Know

Mostly False

Definitely False

A I seem to get sick a lot easier than other people

1 2 3 4 5

B I am as healthy as anybody I know

1 2 3 4 5

C I expect my health to get worse 1 2 3 4 5

D My health is excellent 1 2 3 4 5



40

SYMPTOM CHECK LIST Looking now at the list of symptoms. Which of these have you experienced in the last three months. [AND FOR PART A]: On a scale of 1 to 10, with one being the best you have felt and 10 being the worst – How bad has your symptom been at its worst in the last three months – ON A SCALE OF 1 to 10. [show card for scale]

[Please Circle]

3.1 Abdominal pain 1 2 3 4 5 6 7 8 9 10

3.2 Day sweats 1 2 3 4 5 6 7 8 9 10

3.3 Depression 1 2 3 4 5 6 7 8 9 10

3.4 Diarrhoea 1 2 3 4 5 6 7 8 9 10

3.5 Food intolerance 1 2 3 4 5 6 7 8 9 10

3.6 Forgetfulness 1 2 3 4 5 6 7 8 9 10

3.7 General body pain 1 2 3 4 5 6 7 8 9 10

3.8 Headaches 1 2 3 4 5 6 7 8 9 10

3.9 Irritability 1 2 3 4 5 6 7 8 9 10

3.10 Joint pain 1 2 3 4 5 6 7 8 9 10

3.11 Light sensitivity 1 2 3 4 5 6 7 8 9 10

3.12 Mental tiredness 1 2 3 4 5 6 7 8 9 10

3.13 Muscle pain 1 2 3 4 5 6 7 8 9 10

3.14 Nausea A 1 2 3 4 5 6 7 8 9 10

3.15 Night sweats 1 2 3 4 5 6 7 8 9 10

3.16 Noise sensitivity 1 2 3 4 5 6 7 8 9 10

3.17 Physical tiredness 1 2 3 4 5 6 7 8 9 10

3.18 Poor appetite 1 2 3 4 5 6 7 8 9 10

3.19 Poor concentration 1 2 3 4 5 6 7 8 9 10

3.20 Skin problems 1 2 3 4 5 6 7 8 9 10

3.21 Sleep problems 1 2 3 4 5 6 7 8 9 10

3.22 Other symptoms 1 2 3 4 5 6 7 8 9 10

[Please specify]_____________________


Section Ten Alcohol Consumption

41

ALCOHOL CONSUMPTION Now I am going to ask you some questions about your alcohol intake…

10.1 Think back to when you were first diagnosed with Hep C. In the first three months after diagnosis did you drink….

1. more then, than before you were diagnosed 2. less then, than before you were diagnosed 3. the same then as you did after you were diagnosed, or 4. You didn’t drink at all then

10.2 Since then, have you changed the amount of alcohol you drink on a regular basis?

Would you say…..

1. You drink more alcohol skip to question 10.4 2. There has been no change 3. You drink less alcohol 4. You stopped drinking altogether

10.3 Why did you stop/cut down drinking? [multiple responses allowed]

1. Advice from doctor 2. Advice from Information on hep C 3. Physical effects 4. Other __________________

10.4 How often did you have a drink containing alcohol in the last 12 months?

1. Never (skip to Question 10.12) 2. Monthly or less 3. 2-4 times per month 4. 2-3 times per week 5. or more times per week

10.5 How many drinks containing alcohol do you have on a typical day when you have been

drinking?

1. 1 or 2 drinks 2. or 4 drinks 3. or 6 drinks 4. to 9 drinks 5. more than 9

10.6 How often do you have five or more drinks on one occasion?

1. Never 2. Less than monthly 3. Monthly 4. Weekly 5. Daily or almost daily

10.7 How often during the last year have you found it difficult to get the thought of alcohol out of your mind?



Section Ten Alcohol Consumption

42

10.8 How often during the last year have you found that you were not able to stop drinking

once you had started?


10.9 How often during the last year have you been unable to remember what happened the

night before because you had been drinking?


10.10 How often during the last year have you needed a first drink in the morning to get

yourself going after a heavy drinking session?


10.11 How often during the last year have you had a feeling of guilt or remorse after drinking?


10.12 Have you or someone else been injured as a result of your drinking?

1. No 2. Yes, but not in the last year 3. Yes, during the last year

10.13 Has a relative or friend or a doctor or other health worker been concerned about your

drinking or suggested you cut down?

1. No 2. Yes, but not in the last year 3. Yes, during the last year


Section Eleven Mini-Mac Scale

43

MINI-MAC SCALE I have a number of statements which describe people’s own reactions to having Hepatitis C. How do these statements apply to you at the moment. [show card of response categories] Definitely Does not Definitely does not apply Applies applies apply to me to me to me to me

11.1 At the moment I take one 1 2 3 4 day at a time 11.2 I see my illness as a 1 2 3 4 challenge 11.3 I’ve put myself in the 1 2 3 4 hands of God 11.4 I feel like giving up 1 2 3 4 11.5 I feel very angry about 1 2 3 4 what has happened to me 11.6 I feel completely at a 1 2 3 4 loss about what to do 11.7 It is a devastating feeling 1 2 3 4 11.8 I count my blessings 1 2 3 4 11.9 I worry about the hepatitis 1 2 3 4 returning or getting worse 11.10 I try to fight the illness 1 2 3 4 11.11 I distract myself when 1 2 3 4 thoughts about my illness come into my head 11.12 I can’t handle it 1 2 3 4 11.13 I am apprehensive 1 2 3 4 11.14 I am not very hopeful 1 2 3 4

about the future


Section Eleven Mini-Mac Scale

44

Definitely Does not Definitely does not apply Applies applies apply to me to me to me to me 11.15 I feel there is nothing I 1 2 3 4 can do to help myself 11.16 I think it is the end of 1 2 3 4 the world 11.17 Not thinking about it 1 2 3 4 helps me cope 11.18 I am very optimistic 1 2 3 4 11.19 I’ve had a good life 1 2 3 4 what’s left is a bonus 11.20 I feel that life is 1 2 3 4 hopeless 11.21 I can’t cope 1 2 3 4 11.22 I am upset about having 1 2 3 4 hepatitis C 11.23 I am determined to beat 1 2 3 4 this infection 11.24 Since my hepatitis diagnosis 1 2 3 4 I now realise how precious life is and I’m making the most of it 11.25 I have difficulty in believing 1 2 3 4 that this happened to me 11.26 I make a positive effort not 1 2 3 4 to think about my illness 11.27 I deliberately push all 1 2 3 4 thoughts of hepatitis C out of my mind 11.28 I suffer great anxiety 1 2 3 4 about it 11.29 I am a little frightened 1 2 3 4 11.30 I do not worry about 1 2 3 4 having HepC

Documents

Quality of Life Among People Living with Chronic Hepatitis ... · Ms Dottie St Clair Gympie Hospital Health Service District Ms Marlene Lear Ms Mary Potter Hervey Bay Women’s Health