Abstract
Quality of life has been shown to be poor among people living with chronic hepatitis C. However, it is not clear how this relates to the presence of symptoms and their severity. The aim of this study was to describe the typology of a broad array of symptoms that were attributed to hepatitis C virus (HCV) infection. Phase 1 used qualitative methods to identify symptoms. In Phase 2, 188 treatment-naïve people living with HCV participated in a quantitative survey. The most prevalent symptom was physical tiredness (86%) followed by irritability (75%), depression (70%), mental tiredness (70%), and abdominal pain (68%). Temporal clustering of symptoms was reported in 62% of participants. Principal components analysis identified four symptom clusters: neuropsychiatric (mental tiredness, poor concentration, forgetfulness, depression, irritability, physical tiredness, and sleep problems); gastrointestinal (day sweats, nausea, food intolerance, night sweats, abdominal pain, poor appetite, and diarrhea); algesic (joint pain, muscle pain, and general body pain); and dysesthetic (noise sensitivity, light sensitivity, skin problems, and headaches). These data demonstrate that symptoms are prevalent in treatment-naïve people with HCV and support the hypothesis that symptom clustering occurs.
Key Words
Introduction
An estimated 170 million people, approximately 3% of the world's population, are infected with the hepatitis C virus (HCV).
1
HCV is one of the major causes of cirrhosis, liver cancer, and liver-related deaths. However, only a relatively small proportion of those infected with this virus will develop these life-threatening complications.2
The major impact of HCV for most people living with this virus is therefore likely to be on their quality of life (QOL).This issue has attracted considerable interest.
3
, 4
, 5
, 6
, 7
, 8
, 9
, 10
, 11
, 12
, 13
, 14
, 15
, 16
, 17
, 18
These studies have demonstrated that health-related QOL (HRQOL) is relatively poor in people with HCV infection compared with controls, population normative data, or people with other liver diseases, and that HRQOL improves with eradication of the virus. These are important data, although many questions remain. It is not yet clear whether HCV infection has specific effects on health, or indeed whether there are typical symptoms. Further, if there are typical symptoms, we do not know if these are the primary reason for impaired QOL, or whether this is best explained by other factors in the lives of people living with HCV infection. Progress with these questions would be aided by a better understanding of the typology of symptoms.Only a small number of studies have addressed the issue of symptoms associated with HCV infection and this usually has not been the main focus of the research. Table 1 details the studies that have reported the prevalence of symptoms associated with HCV infection. Desmet et al.
15
in this early research, described the symptoms of chronic HCV as “typically mild, somewhat nonspecific and often overlooked” and reported fatigue as the most common symptom. Other studies have ascribed a variety of symptoms to hepatitis C including fatigue, malaise, myalgia, arthralgia, depression, fever, chills, nausea, vomiting and headache, abdominal pain, anorexia, vomiting, weight loss, rashes, and eye problems.5
, 6
, 15
, 16
, 17
, 18
, 19
, 20
Table 1Summary of Published Studies of the Prevalence of Symptoms Attributed to HCV
| Fatigue/Physical Tiredness | Arthralgia | Myalgia | Nausea | Abdominal Pain | Depression | Headache | |
|---|---|---|---|---|---|---|---|
| Desmet et al., 15 | |||||||
| Tong and el-Farra, 5 n=125 | >50% | ||||||
| Hoofnagle, 16 n=108 | 62% | 19% | 31% | ||||
| Lee et al., 6 n=581 | 45% | 17% | |||||
| Sladden et al., 20 n=219 | 36% | 21% | 21% | ||||
| Barkhuizen et al., 19 n=239 | 56% | 42% | 38% | ||||
| Cotler et al., 18 n=222 | 25% | 6% | 5% | 3% | 2% | 12% | |
| Gifford et al., 17 n=462 | 44% | 13% | 25% | ||||
a Symptoms listed but no prevalence reported.
b Arthralgia and myalgia were combined.
c Nausea and abdominal pain were combined.
There are a number of limitations to these studies. Fatigue/physical tiredness was the only symptom mentioned in all studies. This was followed by arthralgia and myalgia, which were sometimes combined into one category, as were nausea and abdominal pain. In two of the studies,
5
, 6
symptomatology is not the main focus, and the data on symptoms are difficult to abstract. In general, it is not clear in these studies whether predefined lists of symptoms were used or if patients were asked to describe symptoms they attributed to HCV infection.5
, 6
, 15
, 16
, 17
, 20
This distinction is important because the investigators may have compiled the symptom list and these therefore do not necessarily reflect the lived experience of HCV infection.The nature of clustering of symptoms is a new area of research. Exploratory factor analysis has been used to investigate symptoms clusters in cancer patients
21
, 22
and patients with gastrointestinal symptoms,23
, 24
while cluster analysis has been used to group patients according to symptoms.25
, 26
The identification and definition of symptom clusters in patients with cancer or chronic disease has the potential to impact on their treatment and pharmacotherapy.22
, 27
Anecdotally, from our clinical experience, patients with HCV appear to describe more severe symptoms than patients with other liver diseases; however, there is a paucity of data on this. Our aim was to describe the type, prevalence, and severity of symptoms in people living with HCV. In Phase 1 of this study, the aim was to determine the diversity of symptoms using a qualitative approach. The aim of Phase 2 was to examine symptom prevalence and severity in a broad-based sample of people living with hepatitis C and to delineate the types of symptom clusters that occur.
Methods
The Hepatitis C Quality of Life Project of the Queensland University of Technology and the University of Queensland was established to examine the impact of HCV infection on QOL. The study protocol conformed to the ethical guidelines of the 2000 Declaration of Helsinki and was approved by the following Human Research Ethics Committees: Queensland University of Technology; The Royal Brisbane and Women's Hospital; the Hospitals and Health Service Districts of Bundaberg, Cairns, Gold Coast, Gympie, Logan, Nambour, Redcliffe/Caboolture, Rockhampton, Toowoomba, Townsville; and the Prince Charles Hospital.
Phase 1: Qualitative Assessment of QOL in HCV Infection
The initial step in the research program was to form a Community Advisory Group (CAG) consisting of 14 stakeholders, including people with HCV infection, clinicians, nurses, and individuals from nongovernment and community-based organizations (see Acknowledgments). The CAG identified six broad QOL domains affected by HCV infection: physical, psychological, interpersonal/sexual, social, work/economic, and lifestyle issues. Based on these broad domains, 14 guiding questions were developed to elicit open-ended discussion in semistructured interviews (Appendix I).
Participants were recruited who were identified as having HCV infection. They included people with medically acquired HCV, current and past injecting drug users, young people (<25 years old), people living in rural and urban Queensland, and male prisoners. This broad-based recruitment strategy was a deliberate attempt to examine the diversity of the lived experience of HCV infection.
Focus groups and one-to-one interviews were recorded and transcribed verbatim. Transcripts were formatted for import into the qualitative analysis software, NUD∗IST V4 (Qualitative Solutions and Research, Melbourne, Victoria, Australia). NUD∗IST software supports data coding and organization in an index system and is an efficient data-handling tool for textual data such as interview transcripts.
28
In accordance with recognized techniques for the qualitative analysis of interviews, text was coded into categories relating to the six fields identified by the CAG.
29
In addition to coding predetermined categories, line-by-line coding was conducted so that all experiential concepts related to hepatitis C were coded, a process known as open coding.30
The analysis resulted in a description of symptoms that formed the basis for the second phase of the project. The reliability of this approach was assessed by recontacting participants to confirm that the analysis had correctly identified relevant symptoms.Phase 2: Quantitative Assessment of Symptom Profile in HCV Infection
Participants were recruited from a variety of agencies in urban and rural Queensland including hepatology outpatient clinics, blood coagulation disorder clinics, drug and alcohol services, and community support organizations (see Acknowledgments). Multiple methods were used to recruit participants, including approaches by clinic staff, community organization newsletters, recruitment flyers on notice boards, and by direct referral. All subjects had HCV antibodies confirmed by central review of pathology reports, although different commercial HCV antibody tests had been used in the various centers. Exclusion criteria included coinfection with hepatitis B or HIV/AIDS, or previous HCV treatment with interferon-based therapies, inability to provide informed consent, pregnancy, and age under 18 years. Finally, where HCV RNA was available, participants who were HCV RNA negative were excluded.
Questionnaires were completed in one-to-one confidential interviews, with the questions asked in a standardized format by a single researcher (CL). Questions were included to assess the presence and severity of the 21 individual symptoms identified in Phase 1 (see Appendix II). Participants were shown a list of the symptoms and asked if they had experienced any of the symptoms in the previous 3 months. Participants were then shown a visual analogue scale (VAS) and asked to score the severity of each symptom at its worst in the last 3 months, with 0 being the symptom absent and 10 being the symptom experienced at its worst in the previous 3 months. To explore the phenomenon of “clustering of the symptoms” participants were asked if they had experienced episodes in the last 3 months where a group of these symptoms occurred together. In addition, there were questions relating to the mode and duration of HCV infection as well as basic demographic information.
Statistical Analysis
Data were analyzed with the Statistical Package for Social Sciences (SPSS) software package v11.0.0 using descriptive univariate analysis, Chi-squared (χ2) analysis, and Fisher's exact tests of measures of association where appropriate. The nonparametric Mann-Whitney U test was used to test for differences in the median symptom severity scores across gender, age group, and location (the transgender participant was excluded from all gender analyses). To examine whether any interrelationships existed between symptoms, a principal component analysis (PCA) with varimax rotation was performed on the VAS for the 21 individual symptoms. The assignment of individual symptoms to an independent factor was predicated by the highest factor loading score. Clinically meaningful labels were assigned by the authors to each of the factors. The internal consistency and reliability of the derived clusters from this analysis was assessed with Cronbach's α. Statistical significance was set at P<0.05 (two tailed).
Results
Phase 1
The first phase of the study used qualitative methodologies to broadly determine the possible impact of HCV infection on QOL. Seventy-three people (25 females, 48 males; mean age=38 years, SD=9 years) with a diagnosis of hepatitis C infection were interviewed in one to one (n=20) and 12 group interviews (n=53). There was considerable diversity among participants in demographic and social background (Table 2).
Table 2Characteristics of People Living with HCV Who Participated in Qualitative Phase 1 and Quantitative Phase 2 of the Study
| Phase 1, n=73 | Phase 2, n=188 | |
|---|---|---|
| n (%) | n (%) | |
| Gender | ||
| Male | 48 (65.8) | 125 (66.5) |
| Female | 25 (34.2) | 62 (33.0) |
| Transgender | 0 (0) | 1 (0.5) |
| Age | 39 (SD=9 years) | 42 (SD=10 years) |
| Level of education | ||
| University | 17 (23.3) | 29 (15.4) |
| Trade/certificate | 16 (21.9) | 34 (18.1) |
| Year 12 | 15 (20.5) | 30 (16.0) |
| <Year 11 | 23 (31.5) | 95 (50.5) |
| Income | ||
| Wage/salary | 39 (53.4) | 67 (35.6) |
| Partnership/business | 0 (0) | 17 (9.0) |
| Pension/govt. benefit | 25 (34.2) | 99 (61.1) |
| No income | 9 (12.3) | 5 (2.7) |
| Location | ||
| Metropolitan | 55 (75.3) | 115 (61.2) |
| Non-Metropolitan | 14 (19.2) | 70 (37.2) |
| Years since diagnosis | ||
| <1 year | 4 (5.5) | 35 (18.6) |
| 1–5 | 40 (54.8) | 55 (29.3) |
| 6–10 | 20 (27.4) | 44 (23.4) |
| 10+ | 8 (11.0) | 41 (21.8) |
Analysis of the transcribed audiotaped interviews identified 21 symptoms that were mentioned by three or more participants (see left-hand column of Table 3). Symptoms ranged from those typically described in clinical literature (e.g., tiredness, nausea, food intolerance) to others that are rarely if ever mentioned, such as sleeping problems, night or day sweats, and hypersensitivity to light and noise. In addition, some participants volunteered that these symptoms tend to appear in distinct temporal clusters. One person described these as “hep C attacks.”
Table 3Prevalence, Gender Differences, and Median Severity of Symptoms in People Living with Chronic Hepatitis C Infection
| Symptom Prevalence | |||||
|---|---|---|---|---|---|
| Total | Male, n=125 | Female, n=62 | Symptom Severity | ||
| Symptom | n (%) | n (%) | n (%) | P Value | Median (min,max) |
| Physical tiredness | 160 (85.6) | 101 (80.8) | 59 (95.2) | 0.005 | 7 (2,10) |
| Irritability | 139 (74.3) | 89 (71.2) | 50 (80.6) | 0.111 | 6 (1,10) |
| Depression | 130 (69.5) | 78 (62.4) | 52 (83.9) | 0.002 | 6 (1,10) |
| Mental tiredness | 130 (69.5) | 77 (61.6) | 53 (85.5) | 0.001 | 7 (2,10) |
| Abdominal pain | 128 (68.4) | 82 (65.6) | 46 (74.2) | 0.153 | 6 (1,10) |
| Forgetfulness | 122 (65.2) | 75 (60.0) | 47 (75.8) | 0.023 | 5 (1,10) |
| Sleep problems | 122 (65.4) | 79 (63.2) | 43 (69.4) | 0.253 | 8 (2,10) |
| Joint pain | 119 (63.6) | 83 (66.4) | 36 (58.1) | 0.170 | 7 (1,10) |
| Poor concentration | 115 (61.5) | 71 (56.8) | 44 (71.0) | 0.042 | 6 (1,10) |
| General body pain | 107 (57.2) | 70 (56.0) | 37 (59.7) | 0.375 | 6 (1,10) |
| Headaches | 104 (55.6) | 57 (45.6) | 47 (75.8) | 0.000 | 4 (1,10) |
| Muscle pain | 101 (54.0) | 67 (53.6) | 34 (54.8) | 0.499 | 6 (2,10) |
| Nausea | 99 (52.9) | 59 (47.2) | 40 (64.5) | 0.018 | 5 (1,10) |
| Poor appetite | 94 (50.3) | 59 (47.2) | 35 (56.5) | 0.150 | 6 (1,10) |
| Food intolerance | 90 (48.1) | 51 (40.8) | 39 (62.9) | 0.003 | 5 (1,10) |
| Diarrhea | 87 (46.5) | 56 (44.8) | 32 (50.0) | 0.303 | 4 (1,10) |
| Night sweats | 86 (46.0) | 55 (44.0) | 31 (50.0) | 0.268 | 6 (1,10) |
| Day sweats | 79 (42.2) | 46 (36.8) | 33 (53.2) | 0.024 | 4 (1,10) |
| Skin problems | 78 (41.7) | 47 (37.6) | 31 (50.0) | 0.072 | 6 (1,10) |
| Light sensitivity | 71 (38.0) | 36 (28.8) | 35 (56.5) | 0.000 | 5 (1,10) |
| Noise sensitivity | 69 (36.9) | 38 (30.4) | 31 (50.0) | 0.007 | 6 (1,10) |
a Symptom severity score: 1=“best you have felt” and 10=“the worst you have felt” in those who experienced the symptom.
b Significance level 0.05 (two tailed).
Phase 2
In the second phase, we sought to examine symptoms attributed to HCV in more depth, and participants were asked about the prevalence and severity of the 21 symptoms identified in Phase 1. One hundred and eighty-eight people living with chronic HCV infection participated (125 males, 62 females, and 1 transgender, mean age 42 years, SD=10 years; see Table 2).
Table 3 shows the prevalence of the 21 symptoms and the median severity of those people who experienced the symptom. The 10 most prevalent symptoms in order were physical tiredness (86%), irritability (75%), depression (70%), mental tiredness (70%), abdominal pain (68%), forgetfulness (65%), sleep problems (65%), joint pain (64%), poor concentration (62%), and general body pain (57%). When present, the symptoms with the greater reported severity were sleep disturbance, physical tiredness, mental tiredness, and joint pain, while the median severity of all other symptoms was moderate (median severity 4 to 6).
Four people (2.1%) experienced no symptoms within the 3 months prior to interview, 28 (15%) experienced between one and five symptoms, 80 (43%) experienced six to 14 symptoms, and 75 (40%) reported 15 or more symptoms. Thirty-three people (17%) experienced symptoms not listed in Table 3 including back pain; constipation; cramps; eye problems (spots, dry, or watery eyes); low libido; medication sensitivity; mood swings; night fevers; odor sensitivity; pruritus and other minor skin complaints; swelling, particularly of the lower limbs; throat problems; vertigo; and weight loss. Each of this latter group of symptoms was reported by fewer than three people and was not included in the subsequent analysis.
Women were significantly (P<0.05) more likely than men to report physical tiredness (95% vs. 80%), depression (84% vs. 62%), mental tiredness (85% vs. 62%), headaches (76% vs. 46%), food intolerance (63% vs. 41%), sensitivity to light (57% vs. 29%) and noise (50% vs. 30%), as well as forgetfulness (76% vs. 60%), poor concentration (71% vs. 57%), nausea (65% vs. 47%), and day sweats (53% vs. 47%). One hundred sixteen participants (62%) reported that the symptoms tended to cluster together at various times (temporal clustering).
Factor Analysis of Symptoms Attributable to HCV
An exploratory PCA with varimax rotation was conducted (Table 4). The factor solution extracted four factors with Eigenvalues greater than 1. These factors accounted for 56.7% of the total variance.
Table 4Factor Loadings from the PCA of Symptoms Attributed to Chronic HCV Infection
| Symptom | Neuropsychiatric | Gastrointestinal | Algesic | Dysesthetic |
|---|---|---|---|---|
| Mental tiredness | 0.773 | 0.143 | 0.106 | 0.200 |
| Poor concentration | 0.758 | 0.199 | 0.123 | 0.043 |
| Forgetfulness | 0.693 | 0.039 | 0.074 | 0.223 |
| Depression | 0.680 | 0.191 | 0.071 | 0.337 |
| Irritability | 0.645 | 0.097 | 0.159 | 0.307 |
| Physical tiredness | 0.600 | 0.287 | 0.340 | 0.093 |
| Sleep problems | 0.582 | 0.281 | 0.314 | 0.024 |
| Day sweats | 0.214 | 0.665 | 0.176 | −0.151 |
| Nausea | 0.267 | 0.651 | 0.119 | 0.289 |
| Food intolerance | 0.110 | 0.619 | 0.087 | 0.250 |
| Night sweats | 0.319 | 0.587 | 0.266 | −0.112 |
| Abdominal pain | 0.120 | 0.568 | −0.004 | 0.444 |
| Poor appetite | 0.504 | 0.525 | 0.109 | 0.194 |
| Diarrhea | −0.143 | 0.395 | 0.295 | 0.247 |
| Joint pain | 0.182 | −0.000 | 0.858 | 0.123 |
| Muscle pain | 0.253 | 0.277 | 0.763 | 0.099 |
| General body pain | 0.240 | 0.314 | 0.638 | 0.196 |
| Noise sensitivity | 0.214 | 0.012 | 0.181 | 0.783 |
| Light sensitivity | 0.315 | 0.043 | 0.280 | 0.656 |
| Skin problems | 0.211 | 0.331 | −0.168 | 0.494 |
| Headaches | 0.225 | 0.284 | 0.216 | 0.472 |
| % of variance | 19.7 | 14.2 | 11.5 | 11.2 |
| Cronbach's α | 0.87 | 0.78 | 0.81 | 0.68 |
Note: Entries in bold reveal the factor loadings for symptoms in each symptom cluster.
Factor 1 represented a neurological/fatigue factor and accounted for 20% of the total variance. This factor contained the items mental tiredness, poor concentration, forgetfulness, depression, irritability, physical tiredness and sleep problems, and was labeled the neuropsychiatric cluster. Factor 2 consisted of a gastrointestinal group of symptoms and included nausea, food intolerance, abdominal pain, poor appetite, and diarrhea, as well as day and night sweats. This factor accounted for 14% of the total variance and was labelled the gastrointestinal cluster. Factor 3 consisted of a pain-related group of symptoms: joint pain, muscle pain, and general body pain. This factor, labelled the algesic cluster, explained 11% of the total variance. The last factor contained symptoms that conceptually appeared related to heightened sensitivity: noise sensitivity, light sensitivity, skin problems, and headaches. This group of symptoms (Factor 4) was labeled the dysesthetic cluster and accounted for 11% of the variance.
The internal reliability of the four factors was assessed using Cronbach's α coefficient. Factors 1 and 3 demonstrated a high level of internal reliability (0.87 and 0.81, respectively). Factor 2 demonstrated good internal consistency (0.78) while Factor 4 was not quite as robust (0.68).
Discussion
The current study extends our clinical impression that individuals with HCV experience a variety of symptoms and that these symptoms are frequently perceived to have moderate to severe intensity. It highlights the high prevalence and severity of physical tiredness, irritability, depression, mental tiredness, and abdominal pain in people living with hepatitis C. In addition, the study identified several previously unreported symptoms including night sweats, day sweats, light sensitivity, and noise sensitivity. Identification of these latter symptoms was facilitated by the qualitative research approach used in Phase 1 of the project.
Some of the symptoms we identified have been reported previously, particularly fatigue, nausea and abdominal pain,
15
, 16
, 17
, 20
and myalgia and arthralgia.15
, 18
, 19
The prevalence of symptoms in the current study is higher than in these earlier reports; this may reflect in part the strategy of asking about a specific list of symptoms. It is important to recognize that few participants (four) reported no symptoms. There are several potential explanations for this, other than the contribution from HCV infection. Many of these symptoms are experienced in everyday life, although there are no published data of the prevalence and severity in the general population.A number of host and viral factors could contribute to the presence of symptoms in people living with hepatitis C. Several studies have found evidence of direct effects of HCV on the central nervous system.
31
, 32
This could contribute to some of the symptoms, particularly those in the neuropsychiatric cluster. Similarly, several of the symptoms, fatigue in particular, could be a consequence of liver injury. Perceptions about hepatitis C could also contribute independently of virological and host factors: Rodger et al.10
showed that several domains of QOL, as assessed by the Short Form-36, were impaired in people who were unaware that they had HCV infection; however, there was significantly more impairment among those who knew they were infected.There is a clear gender difference in the reporting of symptoms.
33
In the current study, women were more likely than men to report experiencing physical tiredness, mental tiredness, depression, forgetfulness, poor concentration, headaches, nausea, food intolerance day sweats, and sensitivity to light and noise. These differences in the pattern of symptom reporting are consistent with studies of other chronic diseases.17
, 33
, 34
Symptom clusters have been identified in patients with cancer and other chronic diseases by using exploratory factor analytical techniques.
22
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, 27
, 35
, 36
, 37
, 38
, 39
PCA identified four related groups of symptoms in our sample. These symptom clusters were neuropsychiatric, gastrointestinal, algesic, and dysesthetic clusters. Each factor explained more than 10% of the variance and internal consistency, as measured with Cronbach's α for each of these four factors, was good. Additionally, the symptoms within clusters appear face valid as they are thematically related. This provides confidence that the symptom clusters are clinically meaningful and warrant further investigation. It should be emphasized that although the symptom clusters occur in the same individual, the symptoms in these clusters do not necessarily occur at the same time. The presence of symptoms occurring contemporaneously (i.e., clusters) was reported by 62% of our participants and warrants further investigation.Several limitations should be noted. First, although the aim of the qualitative phase was to encourage a broad discussion of the QOL of people with HCV infection, the questions we used to stimulate dialogue (see Appendix I) might have restricted the focus to specific types of problems. Second, we assessed symptom profiles in a broad-based sample of people with HCV, and for logistic reasons, HCV RNA studies were not performed. A proportion of the participants may have cleared the virus and therefore should no longer have viral impact on their QOL. Although we attempted to consecutively enrol all eligible subjects at the various centers, there was the potential for selection bias in recruitment, both by referring health care workers and the self-selection by participants who agreed to be interviewed.
This study was not designed to determine whether symptoms and symptom clusters are specific to HCV. Studies to examine HCV RNA positive and negative patients, and the contributions of genotype, viral load, hepatic inflammation, and degree of fibrosis to symptom profile, may clarify this point. The main contributions of this paper are that we developed a list of symptoms attributed to HCV from qualitative interviews of people living with this virus, and using this list of symptoms identified four distinct clusters that statistically explain more than half the total variance in symptoms.
In conclusion, people living with HCV experience a significant burden of symptoms in terms of both diversity and severity. The current study has identified four clusters of symptoms that occur in treatment-naïve patients. These data provide a basis for future studies to determine if these symptoms and clusters are more prevalent and severe in HCV than in other liver diseases or in healthy controls and to examine the host and virological factors that contribute to these symptoms.
Acknowledgments
The authors would like to acknowledge the following people: Ms. Rebecca Begbie, Ms. Kalie Bloxsom, Dr. Peter Boyd, Ms. Michelle Cook, Ms. Anna Cooney, Ms. Peta Deppeler, Ms. Mary Fenech, Ms. Anne Fisher, Mr. Patrick Gallagher, Ms. Lyn Gartlin, Ms. Prue Harding, Dr. John Hooper, Dr. Kate Hudson, Dr. Georgia Hume, Mr. Sean Keough, Ms. Mary Lafin, Ms. Sara Lane, Ms. Marlene Lear, Dr. Barbara Leggett, Mr. Patrick Martin, Dr. John Masson, Ms. Morag McColm, Ms. Karen McGill, Ms. Gillian McManus, Ms. Karen McWilliams, Dr. Case Nydham, Dr. George Ostapowicz, Dr. John Patton, Ms. Mary Potter, Dr. John Rowell, Prof. John Saunders, Ms. Ann Scott, Ms. Sue Sharman, Ms. Dottie St. Clair, Ms. Leanne Stone, Ms. Caroline Taylor, Mr. Jeff Ward, Dr. Nicola Weston, and Ms. Beryl Zeissink.
The authors would also like to acknowledge the following organizations and affiliated Human Research Ethics Committees: Biala (Brisbane Community Health Center, The Prince Charles Hospital Health Service District); Brisbane Hemophilia Support Group; Brisbane Youth Services; Bundaberg Base Hospital; Cairns Base Hospital; Capricornia Youth Service; Gold Coast Hepatitis C Support Group; Gold Coast Hospital Health Service District; Gympie Hospital Health Service District; Hepatitis C Council of Queensland; Hervey Bay Women's Health Center; Kobi House (Toowoomba Hospital Health Services District); Logan Hospital; Mackay Base Hospital; Nambour Hospital; Princess Alexandra Hospital; Queensland Corrective Services; Queensland Intravenous AIDS Association; Redcliffe and Caboolture Health Service District; Royal Brisbane Hospital; The Center (Rockhampton); Sunshine Coast Injectors Voice and Action Group (SCIVAA); and Townsville Hospital Health Service District.
Appendix I Guiding Questions for Phase 1 Interviews
- 1.How do you personally define quality of life?
- 2.What physical effects, if any, do you experience in relation to chronic hepatitis C infection?
- 3.Are there problems with sleeping, like trouble getting to sleep, anxious waking, or waking up tired?
- 4.If you experience fatigue, what kinds of things can you do to help you cope?
- 5.Does hepatitis C affect your ability to concentrate or remember things?
- 6.Have you noticed whether hepatitis C affects your moods?
- 7.How does living with hepatitis C impact on your social life?
- 8.What about work, or the ability to do things that you would normally do?
- 9.What are the main economic costs of having this infection?
- 10.How do you decide whom to tell about your hepatitis C?
- 11.Does living with this virus affect intimate, personal relationships, including sex life?
- 12.Do many people with hepatitis C suffer from discrimination?
- 13.What do you think is behind the discrimination around hepatitis C?
- 14.Are there any other ways that hepatitis C affects quality of life that we haven't discussed?
Appendix II Symptom Checklist
Looking now at the list of symptoms, which of these have you experienced in the last three months? On a scale of 0 to 10, with zero being the symptom absent, 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 0 to 10.?
Tabled
1
| Abdominal pain | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Day sweats | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Depression | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Diarrhea | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Food intolerance | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Forgetfulness | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| General body pain | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Headaches | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Irritability | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Joint pain | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Light sensitivity | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Mental tiredness | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Muscle pain | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Nausea | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Night sweats | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Noise sensitivity | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Physical tiredness | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Poor appetite | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Poor concentration | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Skin problems | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Sleep problems | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| Other symptoms | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
| [Please specify] |  | ||||||||||
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Article info
Publication history
Accepted:
August 25,
2005
Footnotes
Phase 1 of this research was supported by a grant from the National Health and Medical Research Council Strategic Reserve Fund for Hepatitis C Social and Behavioral Research; Ms. Sue Conrad received scholarship support from a Queensland University of Technology Faculty of Health Honors Award. Phase 2 of the research was supported by grants from Queensland Health Communicable Diseases Unit, Hemophilia Foundation Australia and the Hepatitis C Council of Queensland.
Identification
Copyright
© 2006 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc.
