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Impact of hepatitis C
on health related quality of life: A systematic review and
quantitative assessment
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--Many health professionals & patients
underestimate the true burden of HCV on quality of life.
This study examined a tool used in research, HRQOL (health
related quality of life), to see how it can be used to
evaluate the affect of HCV on quality of life, and the
affect on quality of life when a patient achieves an SVR
from treatment for HCV. Investigators performed a
comprehensive systematic review to quantify the impact of
chronic HCV on HRQOL. The study authors report: HCV
diminishes quality of life. Patients achieving a sustained
viral response (SVR) achieve an improvement in quality of
life. The study found that the impact of HCV is most
dramatic in social and physical function, general health,
and vitality. Data indicate that HCV not only impacts
biological functioning, but also neurological, psychological
and social functioning. The authors report the feeling on
the part of the patient of being stigmatized for having HCV
can have an effect: compared with HCV patients who did not
feel stigmatized by their disease, those who felt severely
stigmatized scored 8 points lower on average on the total
Sickness Impact Profile score. In the Author Discussion, the
use of the HRQOL test in clinical practice is reviewed.
The authors conclude: chronic HCV diminishes HRQOL across a
wide range of clinical anchors. The impact on HRQOL is
highly clinically significant and affects physical, social,
and mental health domains. Sustained virological response is
associated with improvement in HRQOL, thereby indicating
that treatment of HCV may improve patient-oriented outcomes
in addition to established biological outcomes. We estimate
that a change of 4.2 points on the vitality scale of the
SF-36 may represent the minimally important difference in
HRQOL in HCV. This value may be used to monitor patient
outcomes in clinical practice as well as clinical trials.
Hepatology
April 2005
Brennan M.R. Spiegel 1 2 3, Zobair M. Younossi 4, Ron D.
Hays 5 6, Dennis Revicki 7, Sean Robbins 8, Fasiha Kanwal 1
2 3 *
1Division of Gastroenterology, VA Greater Los Angeles
Healthcare System
2Division of Digestive Diseases, David Geffen School of
Medicine at UCLA
3Center for the Study of Digestive Healthcare Quality and
Outcomes
4Center for Liver Diseases, Inova Fairfax Hospital
5UCLA School of Public Health
6RAND Corporation Santa Monica
7MEDTAP International
8Global Health Economics, Amgen, Inc.
Introduction
Abstract
Methods & Materials
Author Discussion
Results
INTRODUCTION
Chronic hepatitis C virus (HCV) infection is a prevalent and
expensive condition affecting 4 million people in the United
States at a cost of over $700 million annually.[1] HCV leads
to cirrhosis in up to 20% of those chronically infected[2]
and is the primary indication for liver transplantation
worldwide.[3] This economic burden is multiplied by the
dramatic impact of HCV on health related quality of life (HRQOL)
resulting from complications of advanced liver disease such
as encephalopathy, variceal hemorrhage, ascites, and liver
transplantation.[4-6] However, these end-stage complications
are relatively rare compared with the vast majority of
patients with HCV in the absence of clinically significant
liver disease. Despite the previous consensus that this
majority of patients has asymptomatic seropositivity,[7]
evolving data now indicate that HCV itself may diminish
HRQOL in the absence of advanced liver disease,[8-20]
perhaps as a result of extrahepatic symptoms related to HCV,
cognitive dysfunction related to HCV, or a negative synergy
between HCV and comorbid psychosocial disorders.[10][21]
As awareness grows of the HRQOL decrement from HCV and its
clinical consequences, investigators have become
progressively interested in measuring HRQOL in HCV clinical
trials. This acknowledgment that the burden of HCV extends
beyond its economic impact coincides with recommendations by
the National Institutes of Health to conduct studies that
measure not only traditional biological outcomes in HCV
(i.e., HCV RNA, liver enzyme levels, liver histology), but
also patient-oriented outcomes.[22] However, most clinicians
are not versed in the interpretation of HRQOL in HCV, and
patient-oriented outcomes such as HRQOL may fail to resonate
with clinicians in the same way as traditional biological
parameters. Failure to understand and interpret HRQOL data
in HCV may lead to the myopic view that biological outcomes
are of primary importance - a view that likely
underestimates the true burden of illness engendered by HCV.
In light of the disconnection between the growing importance
of measuring HRQOL in HCV and the inability of many
clinicians to readily interpret HRQOL differences, it is
imperative to establish the clinical significance (in
contrast to the statistical significance) of HRQOL score
differences by anchoring them to changes in clinically
familiar outcomes. By knowing the clinically important
differences in HRQOL, researchers, physicians, and patients
can better understand not only the overall health burden of
HCV, but also the optimal approach to managing HCV.
Nonetheless, despite the increasing awareness of HRQOL in
HCV, there has been no attempt to systematically review the
HRQOL literature in HCV.
In light of this shortcoming we performed a systematic
review and quantitative assessment with the following
objectives: (1) to identify and summarize the published
literature pertaining to HRQOL in HCV; (2) to compare the
HRQOL in patients with HCV versus healthy controls; (3) to
compare the HRQOL in HCV patients achieving sustained
virologic response (SVR) versus those without SVR; (4) to
stratify HRQOL data in HCV by clinically-relevant anchors,
including liver disease severity anchors and neurological,
psychological, and social anchors; and (5) to establish the
minimally clinically important HRQOL difference (MCID) in
HCV. These data may provide the basis for appropriate sample
size calculations in treatment trials, allow physicians to
better monitor patient outcomes in clinical practice, and
equip patients with the knowledge to better select between
competing management strategies.
Materials and Methods
The authors performed a systematic review of MEDLINE, EMBASE,
and published abstracts to identify relevant
English-language publications from January 1990 to June
2004.
ABSTRACT
Hepatitis C virus (HCV) diminishes health related quality of
life (HRQOL), and it is now common to measure HRQOL in
clinical trials. We sought to summarize the HRQOL data in
HCV, and to establish the minimally clinically important
difference (MCID) in HRQOL scores in HCV. We performed a
systematic review to identify relevant studies, and
converted HRQOL data from each study into clinically
interpretable statistics. An expert panel used a modified
Delphi technique to estimate the MCID in HCV.
We found that patients with HCV scored lower than controls
across all scales of the SF-36.
Patients achieving sustained virological response (SVR)
scored higher across all scales versus patients without SVR,
especially in the physical health domains. HRQOL differences
did not correspond with differences in liver histology or
ALT levels.
Based upon the published data, the expert panel concluded
that the SF-36 vitality scale was most relevant in patients
with HCV, and generated a mean MCID of 4.2 points on this
scale.
In conclusion, patients with HCV have a clinically
significant decrement in HRQOL versus controls, and physical
HRQOL improves in patients achieving SVR but not in those
without SVR. The data further suggest that traditional
outcomes fail to capture the full spectrum of illness
related to chronic HCV. A difference of 4.2 points on the
SF-36 vitality scale can be used as an estimate of the MCID
in HCV, and this value may be used as the basis for power
calculations in clinical trials evaluating HRQOL.
AUTHOR DISCUSSION
The burden of disease engendered by chronic HCV extends
beyond its impact on traditional biological outcomes to
include a negative impact on patient-oriented outcomes such
as HRQOL. It is now common practice to include HRQOL as a
primary outcome in clinical trials, to incorporate HRQOL in
cost-effectiveness analyses, and to monitor HRQOL in
everyday clinical practice in HCV. In light of these trends,
we performed a comprehensive systematic review to quantify
the impact of chronic HCV on HRQOL. Our analysis has five
key findings: First, patients with HCV have consistently
diminished HRQOL compared with matched controls without HCV.
Second, patients with HCV achieving SVR have an improved
HRQOL compared with those without SVR. Third, the impact of
HCV is most pronounced on the vitality, general health,
physical function, and social function scales of the SF-36
Health Survey, thereby indicating an impact across a wide
range of HRQOL domains. Fourth, the impact of HCV on HRQOL
is likely to be clinically important as measured by proposed
criteria for determining the significance of HRQOL effect
sizes.[24] Last, traditional outcomes in both clinical
management and treatment trials, such as ALT levels and
early histological changes, fail to correlate with HRQOL,
thereby suggesting that traditional outcomes may fail to
capture the full spectrum of illness related to chronic HCV.
The insight that HCV diminishes HRQOL is a necessary first
step to understand why it is important to measure HRQOL in
clinical practice. However, knowing that HCV diminishes
HRQOL is insufficient for knowing how to use this
information in clinical practice. This practical challenge
can be met by establishing the minimal change in HRQOL that
patients with HCV perceive to be important. We therefore
convened an expert panel to establish the MCID in HCV using
a modified Delphi technique.[27] The panel relied upon
existing construct-anchored HRQOL data in HCV to estimate
the MCID for the vitality scale of the SF-36, and generated
a value of 4.2 with an ES of 0.2. This value can be used in
everyday clinical practice and in clinical trials. For
example, in clinical practice physicians can measure patient
outcomes by routinely administering the 4-item SF-36
vitality scale during office visits. If a patient fails to
achieve an increase of 4.2 points over time (corresponding
ES = 0.2), then it implies that the ongoing care has failed
to perceptively improve the patient's HRQOL. In clinical
trials, the MCID can be used as a yardstick to determine
whether patients have benefited from the study intervention.
Specifically, patients may be defined as responders if they
achieve or exceed the MCID of 4.2 or an ES of 0.2 on the
vitality scale. This can be used as the basis for power
calculations. Table 8 provides the estimated sample sizes
needed to detect a difference of 5%, 10%, 15%, 20% and 25%
between 2 groups at a power of 80% and 90%.
Our analysis has several strengths. First, we performed an
explicit and reproducible systematic review to identify
relevant data across several sources, including published
manuscripts from two bibliographic databases and published
abstracts from 4 subspecialty journals. Second, we relied
upon a pre-specified conceptual model to guide our data
abstraction. Third, in recognition that different clinical
anchors have variable impacts on HRQOL, we stratified our
analysis across a comprehensive range of neurological,
psychological, social, and liver disease severity anchors.
Fourth, in accordance with recommendations for interpreting
HRQOL, we selected quantitative summary estimates that
emphasize clinical relevance over statistical
significance.[23] Last, our analysis systematically
estimates the MCID in HCV - data that may have important
clinical usefulness as described above.
Our analysis has potential limitations. First, we estimated
the MCID in HCV indirectly by using the results of existing
data rather than directly measuring the MCID according to a
standard protocol. Therefore, our data should not be
confused with a direct measurement of the MCID. However, the
indirect approach has been used in other areas of
medicine[26] and, in the absence of a directly measured MCID,
is an acceptable strategy for estimating this clinically
useful value. Future research should aim to directly measure
the MCID using the accepted patient-based methods,[23] not
only for the SF-36, but also for a disease-targeted measure
such as the Hepatitis Quality of Life Questionnaire (HQLQ).[14][35]
Second, our estimate of the MCID only applies to the
vitality scale of the SF-36. Although the vitality scale in
has a priori and clinical data to support its usefulness in
HCV, relying on the vitality scale alone does not capture
all of the key aspects of HRQOL in HCV. We have therefore
made efforts in our systematic review to abstract data
across all 8 scales, and believe that a balanced
understanding of the relationship between HCV and HRQOL
ultimately requires information from all areas of
biological, psychological, and social health, and not just
one scale alone. Third, the nature of the HRQOL literature
in HCV is itself limited by several factors. For example,
most of the studies included patients from tertiary care
referral centers, and the resulting data may not be
generalizable to community-based cohorts with HCV. However,
although the degree of HRQOL decrement may be smaller in
community versus referral cohorts, there is no reason to
expect that the negative impact of HCV on HRQOL will
disappear in community-based cohorts. In addition, most of
the studies employed the SF-36 Health Survey, a generic
measure of HRQOL, and only one used a disease-targeted
measure of HRQOL - the HQLQ.[14][35] Because the SF-36 may
fail to capture the full range of HRQOL decrements from HCV,
it is important to develop and employ disease-targeted
instrument such as the HQLQ in addition to generic measures
like the SF-36.
In conclusion, chronic HCV diminishes HRQOL across a wide
range of clinical anchors. The impact on HRQOL is highly
clinically significant and affects physical, social, and
mental health domains. Sustained virological response is
associated with improvement in HRQOL, thereby indicating
that treatment of HCV may improve patient-oriented outcomes
in addition to established biological outcomes. We estimate
that a change of 4.2 points on the vitality scale of the
SF-36 may represent the minimally important difference in
HRQOL in HCV. This value may be used to monitor patient
outcomes in clinical practice as well as clinical trials.
RESULTS
Study Selection
The search strategy identified 259 titles, of which 32 met
explicit inclusion criteria (Fig. 2). Of the 32 studies, all
provided sufficient data to calculate either an HRQOL mean
group difference or a DID, 20 provided sufficient
distributional data to calculate an ES, and none provided
criterion-anchored data to measure the MCID.
Results Stratified by Clinical Anchors
HRQOL in HCV Versus Healthy Controls.
Although HCV may diminish HRQOL through complications of
advanced cirrhosis, it may also diminish HRQOL in the
absence of clinically significant liver disease.[8-20] The
mechanism of HRQOL decrement in the absence of liver damage
is unclear. Potential mechanisms include the development of
extrahepatic somatic symptoms (e.g., HCV-related arthralgia
and myalgia), extrahepatic disorders (e.g., HCV-related
cryoglobulinemia, sicca syndrome, glomerulonephritis), or
HCV-related subclinical cognitive dysfunction, among
others.[10][21]
We identified 15 studies that compared HRQOL in patients
with compensated HCV seropositivity versus healthy control
subjects without HCV.[5][8-20][28] All 15 studies measured
HRQOL with the SF-36 Health Survey (refer to the Technical
Appendix for information regarding the SF-36).
HRQOL Score Differences:
All 15 studies provided cross-sectional group mean HRQOL
differences stratified by HCV status - the clinical anchor
in this circumstance. Table 1 presents the data across the 8
SF-36 scales and provides the weighted mean and median for
each scale. The largest impact of HCV was in the
role-physical scale (HCV vs. healthy control weighted mean
cross-sectional difference = -15.8 points), followed by the
role-emotional scale (-13.0) and the general health scale
(-12.6). Three studies measured differences in the Mental
Component Score (MCS) and Physical Component Score
(PCS).[9][11][17] The weighted mean differences in MCS and
PCS were -12.8 and -9.1, respectively. Although there is no
established minimally important difference in SF-36 scale
scores in HCV, a review of SF-36 data in other diseases
revealed that a 3-5 point difference in scale scores may
represent a clinically important difference.[29] Although
these thresholds are potentially arbitrary and fail to
account for the underlying variation in HRQOL scores,[30]
they suggest that the 7-15 point differences observed in
compensated HCV versus healthy controls represent a
clinically important difference across all SF-36 scales.
Effect Sizes:
Ten studies provided sufficient data to calculate
cross-sectional ES for HRQOL in compensated HCV versus
healthy non-HCV controls.[5][8][12-20] The largest ES for
HCV was in the social function and general health scales
(both weighted mean ES = -0.7), followed by the vitality and
role-physical scales (both -0.6). Two studies measured ES in
the MCS and PCS scores. The weighted mean estimates were
-1.0 and -0.75 for MCS and PCS, respectively. Although there
is no established ES corresponding with a minimally
important difference in HCV, the conventional benchmark for
a small ES is <0.2.[30] By this standard the 0.3 to 1.0
range in ES (using absolute values) observed in compensated
HCV versus healthy controls likely represents a clinically
meaningful impact on HRQOL.
Summary of HRQOL in HCV vs. Healthy Controls.
The data consistently reveal that patients with compensated
HCV seropositivity have a diminished HRQOL compared with
healthy controls. Moreover, the impact of HCV on HRQOL is
moderate to large across all SF-36 scales. The impact of HCV
is most dramatic in social and physical function, general
health, and vitality.
HRQOL Stratified by Sustained Virological Response (SVR)
Status.
The traditional short-term goal of treatment in HCV is to
achieve SVR. Although SVR is a biochemical rather than
clinical outcome measure, it is considered to be a surrogate
marker for clinically relevant outcomes including
progression to cirrhosis and survival. Therefore, SVR is a
relevant clinical anchor for HRQOL data. We identified 9
studies that measured HRQOL stratified by SVR.[8][31-38]
HRQOL Score Differences:
Seven studies measured HRQOL DID scores (see equation [2] in
Technical Appendix) stratified by SVR status (Table
3).[8][31-35][38] The largest DID score was in the
role-physical scale (weighted mean = 10.4), followed by
role-emotional (7.5), general health (7.1), and vitality
(6.6). The weighted mean DID scores in the MCS and PCS were
2.7 and 2.6, respectively. Only 2 studies reported
cross-sectional mean HRQOL score differences stratified by
SVR.[36][37] The largest mean difference was in the physical
function scale (11.1), followed by mental health (7.7) and
social functioning (7.5).
Effect Sizes:
Six studies provided sufficient data to calculate an ES for
HRQOL in patients achieving SVR following antiviral therapy
versus nonresponders.[32-36][38] Two studies presented
cross-sectional ES data[36][37] and 4 presented longitudinal
data.[32-35] Consistent with the DID scores, the impact of
SVR was most pronounced on the role-physical and general
health scales (mean weighed ES = 0.4), followed by vitality,
physical function, and social function (0.3 for latter 3
scales).
Summary of HRQOL Stratified by SVR.
The data indicate that HRQOL is consistently worse in
patients that fail to achieve SVR versus patients that
develop viral clearance following treatment for HCV. The
impact of SVR is most pronounced in the role-physical and
general health scales. The data suggest that patients
achieving SVR may have clinically significant improvements
in these HRQOL domains compared to patients with an
unsuccessful treatment course.
HRQOL Stratified by Neuropsychosocial Anchors.
HRQOL Score Differences.
Data indicate that HCV not only impacts biological
functioning, but also neurological, psychological and social
functioning. These neuropsychosocial effects of HCV
adversely impact HRQOL. We identified 6 studies that
measured HRQOL stratified by a neuropsychosocial
anchor.[9][10][15][39-41] One study measured a strictly
neurological anchor (subclinical cognitive dysfunction
determined by evoked potentials),[10] 4 measured
psychological anchors (including depression, psychiatric
comorbidity, and emotional distress),[9][15][39][40] and one
measured a social anchor (stigmatization).[41] Five of the 6
studies measured HRQOL with the SF-36 (Table
5),[9][10][15][39][40] and one used the Sickness Impact
Profile.[41] The largest impact on HRQOL was in the SF-36
role-emotional scale, with cross-sectional HRQOL differences
ranging from -4.0 (subclinical cognitive dysfunction) to
-39.0 (emotional distress). Perhaps more surprising, all of
the somatic scales (physical function, role-physical, bodily
pain) also demonstrated large group mean differences.
Zickmund et al. found similarly large effects on Sickness
Impact Profile scores stratified by patient-reported
stigmatization.[41] Compared with HCV patients who did not
feel stigmatized by their disease, those who felt severely
stigmatized scored 8 points lower on average on the total
Sickness Impact Profile score.
Effect Sizes:
Our review failed to identify any study presenting
sufficient distributional data to calculate an ES across a
neurological, psychological, or social anchor.
Summary of HRQOL Stratified by Neuropsychosocial Anchors.
The data indicate that there are large HRQOL differences in
HCV across neurological, psychological, and social anchors.
These results are not unexpected since each of these
anchors, when present, may independently diminish HRQOL. It
is difficult to determine whether the large impact on HRQOL
observed in these studies is primarily related to the
specific anchors, or whether there is a negative synergistic
effect between these anchors and HCV.
HRQOL Stratified by Liver Disease Severity Anchors.
HCV is associated with a wide-range of extrahepatic
manifestations. Nonetheless, its primary biological impact
is on the liver. Although liver damage does not always
correspond with patient symptoms and overall health status,
liver disease severity is an important surrogate outcome in
the management of HCV. Traditional markers of liver disease
severity include histological activity (e.g., Knodell
scores), biochemical activity (e.g., ALT levels), and
clinical activity (e.g., Child's class, MELD score). We
identified 5 studies that measured HRQOL stratified by one
or more liver disease severity anchor(s) (Table
6).[5][8][15][36][42]
Histological Activity Anchors:
Two studies stratified HRQOL by histological anchors.[8][36]
McHutchison et al. found no significant difference in HRQOL
in patients with a >5 point change in Knodell score (a
histologically important change in disease activity) versus
no change in Knodell score.[8] The HRQOL DID scores ranged
from 0.5 in physical function to 2.4 in vitality. Similarly,
Coughlan et al. detected no significant HRQOL difference in
patients with a <3 Knodell score versus >4 Knodell score
following treatment for HCV.[36] The cross-sectional mean
HRQOL differences ranged from -1.8 in role-physical
(suggesting a unexpectedly higher HRQOL in patients with
worse histological activity) to 2.2 in vitality.
Biochemical Activity Anchors:
Two studies stratified HRQOL by ALT levels.[8][42]
McHutchison et al. found no significant difference in HRQOL
in patients with a >3 times improvement in the ALT ratio (a
clinically important change in biochemical activity) versus
no change in the ALT ratio.[8] Similarly, Miller et al.
detected no difference in either the MCS or PCS in patients
with high versus normal ALT levels.[42] In fact, there was a
trend towards lower HRQOL in those with normal levels (cross
section mean difference for MCS = -0.1, PCS = -3.3).
Clinical Activity Anchors:
Two studies compared HRQOL in patients with HCV-related
Child's class B cirrhosis versus noncirrhotic chronic HCV.[5][15]
Both studies revealed large differences in HRQOL across all
scales. The cross-sectional mean differences ranged from
-7.0 for general health to -44.0 for role-physical and PCS,
and the ES ranged from -0.3 for general health to -1.4 for
physical function and PCS.
Summary of HRQOL Stratified by Liver Disease Severity
Anchors.
The data suggest that subtle histological or biochemical
changes are not perceived as clinically important by
patients, thereby suggesting that these traditional
biological outcomes may fail to capture the full spectrum of
illness related to chronic HCV. In contrast, there are large
and clinically significant differences in HRQOL in patients
with versus without cirrhosis. The large differences in
HRQOL stratified by cirrhosis are not unexpected given the
well-documented negative impact that cirrhosis itself exerts
on HRQOL, independent of concurrent HCV.
Expert Panel Estimate of MCID in HCV
Based upon a priori hypotheses and data from the systematic
review, the expert panel concluded that the SF-36 vitality
scale captures the HRQOL domain of the SF-36 that is most
relevant to patients with HCV. Specifically, because HCV and
its treatment are associated with a range of devitalizing
symptoms such as tiredness, lack of energy, and lassitude,
the SF-36 vitality scale is pertinent in HCV. Moreover, our
systematic review revealed that vitality was one of the key
domains most affected by HCV. Of the 8 SF-36 scales, the
vitality scale ranked in the top 3 for size of HCV impact on
HRQOL across all clinical anchors.
Therefore, rather than develop individual MCID estimates for
each of the 8 SF-36 scales, the panel focused its estimates
on the vitality scale. Based upon independent review of the
systematic review, the panel initially generated a mean MCID
of 4.9 points (range, 2-6) on the SF-36 vitality scale.
After convening in-person and completing the remaining steps
of modified Delphi procedure, the expert panel generated a
mean MCID of 4.2 points (range, 3-5) on the SF-36 vitality
scale, with a corresponding ES of 0.2 (range, 0.15-0.25).
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Combatting HCV Fatigue
Alan Franciscus, Editor-in-Chief
and Fran Carey
http://www.hcvadvocate.org/news/newsLetter/2005/advocate0405.html#2
One of the most vivid memories I have from running a support group is of a
woman who came to one of our support group meetings complaining of fatigue
and depression. When we started our check-in, she expressed her frustration
with the increased bouts of fatigue and the effect they were having on her
life. This person's story is not that much different from others who suffer
from fatigue, but I think that she was able to verbalize what many of us go
through when we are fatigued. She is a single parent of two children. In
order to put food on the table for her family and a roof over their heads,
she is required to work long days and devote all of her precious energy to
work. In the evening when she came home from work she would basically
collapse in front of the TV and would be unable to perform many of the
functions needed to care for herself and her children. She became isolated
and started to become depressed. In addition, she was unable to spend the
necessary time to cook nutritious meals for herself and her children. The
thought of exercise never occurred to her because she was so tired all of
the time. For this person, life became a downward spiral and she saw no way
out. Luckily, she came to a support group. Throughout the evening we were
able to give her words of encouragement - she was not alone. We were also
able to help her develop strategies to combat her fatigue. It was one of
those incredible support group moments when you can start to see a ray of
hope in someone's eye.
One of the most common symptoms that people with hepatitis C experience is
fatigue. In fact, in one study 67% of people living with hepatitis C
reported fatigue as a symptom. Fatigue can range from mild to severe and can
affect every area of life. Fatigue is a difficult symptom to quantify since
it affects everyone differently. Some people with hepatitis C have constant
fatigue while others may have fatigue cycles - sometimes they feel energetic
and at other times they may feel so tired that they might not be able to
perform basic daily functions, such as going to work, cleaning the house or
joining in on social events.
It is important to keep in mind that when living with a chronic illness such
as hepatitis C, energy management should be a top priority. When we push
ourselves beyond our physical capacity, good judgment declines and accidents
occur more frequently. In addition, when fatigue sets in, it is easy to
become depressed or anxious about the future.
One of the most important strategies HCV positive people can adopt is to
pace themselves and focus on techniques that may decrease the time spent
doing certain activities and increase the amount of rest. As well,
activities should be prioritized according to their importance. If the house
needs to be cleaned but you have a dinner date that evening, think about
saving your energy for the evening and doing the house cleaning later in the
week. You don't want to sacrifice needless energy at the expense of more
important areas that will provide more of a balance in your life.
Causes of Fatigue
Fatigue can be caused by many factors including depression, anemia, poor
diet, and lack of exercise, or by more serious ailments. It is important to
talk with your medical provider if you are constantly fatigued. If you feel
too tired to get out of bed for more than 24 hours or if you feel confused,
dizzy, or have a problem waking up you should notify your health care
provider as soon as possible.
Medical Treatment for Fatigue
There are no approved medications to treat HCV-related fatigue, but some
physicians are experimenting with a variety of drugs including Ritalin and
Provigil. However, there is concern about the potential for abuse of these
drugs - especially Ritalin since it is known to exacerbate substance use
disorders. Studies are needed to determine the safety and effectiveness of
these drugs in HCV positive individuals before they are used to treat
HCV-related fatigue.
Rest When Tired
It is important to rest when you get tired or when you have time. Taking
short naps or rest periods during the day helps most people. Try not to
sleep too much during the day because this could affect how well you sleep
at night. Also, too much rest may make you even more tired so try to find a
balance. Many people report that even just taking a few minutes to close
down, mediate, pray, listen to music, reading or thinking about a happy or
positive experience revitalizes them within a very short period of time. If
you are having trouble sleeping or experience insomnia for more than a few
days, talk to your medical provider about medicines to help you sleep.
Plan Activity and Rest
Make a plan for the day, week, and month. Try to alternate activities so
that you can balance the more difficult activities with the lighter
activities. People normally have certain times during the day or night when
they have more energy. Save the more difficult tasks for when you are more
likely to have the energy to perform them. Alternate the difficult with the
easy tasks. Many people with hepatitis C and other chronic illnesses report
that they have more energy in the evening. However, be careful that you don't
overdo it or stay up too late since this can affect how well you sleep in
the evening and how you will feel the next day.
Breathe
Incorrect breathing can lead to fatigue. When people are stressed out or
fatigued they have a tendency to hold their breath. Try deep breathing
exercises and concentrate on how the air goes in and out of your body.
Massage
People report that massage helps to improve their energy and general
wellbeing. Try massage that uses techniques to encourage lymphatic flow and
regain energy.
Acupuncture
Acupuncture is based on the idea that "qi" flows through the body in
channels called meridians; each organ system has a set of channels.
Acupuncture has been found to be helpful in relieving pain, overcoming
addictions and in decreasing fatigue.
Exercise
It may seem counterintuitive, but regular exercise is one of the best
strategies for combating fatigue. Try to stay as active as possible but don't
overdo it. Exercise comes in many forms and walking is one of the best
exercises for relieving fatigue. Other forms of exercise include Pilates,
yoga, swimming, light weight resistance or any other activity that will
re-energize, but do not exercise to the point of becoming overly fatigued.
Listen to your body and let it guide you. Start slowly with a 2- or 3-minute
walk and work your way up to 30 minutes of activity 5 days a week. It is
also recommended that you check-in with your healthcare provider or an
exercise physiologist to determine what level of activity is right for you.
Diet
A healthy and nutritious diet based on the recommendations from health
experts includes finding a balance between the quantities of food you eat
with the amount of energy expended. Try to stay away from foods that are
high in fat, sugar and sodium. Eat larger portions of fruits and vegetables
and drink plenty of water. If possible, consult with a registered dietician
or nutritionist.
Vitamins & Nutritional Supplement
A well-balanced diet should contain all the essential vitamins and minerals
you need, but some people also take vitamin supplements. Taking a
megavitamin supplement may be harmful to the liver. Instead choose a
multi-vitamin supplement without iron that meets the daily requirements.
Is It Important?
Ask yourself -is this task really necessary? Will the benefit outweigh the
chance that you will become overly fatigued? There are many alternatives to
common chores, such as to allow dishes to drip dry, to buy permanent press
or fabrics that need little attention beyond laundering, and to use frozen
or pre-cut vegetables instead of peeling and cutting.
Ask for Help
Don't be afraid to ask for help from family members or friends. Many times
people are willing to help but may not want to interfere with your life. It
never hurts to ask for help and you might be surprised to find that your
family and friends will be more than happy to help you out. However, you may
need to set limits so that it doesn't turn into a social exercise that could
deplete your energy even more. If you have the resources available, it might
be worth considering using a laundry or house cleaning service. The key is
to simplify when possible.
Educate Family and Friends
Talk to your friends about what it means for you to be fatigued. Tell them
that at times you may not be able to participate in social functions or that
you may need to leave early because of fatigue. Learn to say "no" to family
and friends who have unrealistic expectations of your energy level.
Organize
Staying organized is sometimes difficult, but it is the key for putting to
use the limited energy one has. Have organized work centers, with all
supplies for each task stored together:
Keep all of the dry ingredients together including the mixing bowls; keep
measuring tools together.
Put all of the cleaning supplies in a pail.
Store the can opener in the cupboard with the canned goods.
Store pots & pans near the stove.
Keep items within easy reach.
Avoid bending & reaching.
Eliminate unnecessary clutter.
Utilize organizing equipment such as revolving shelves, stacking bins,
lazy-susans, etc.
Use wheels to transport: laundry cart, grocery basket, kitchen cart - to
convey equipment & supplies in one trip. Load the cart with all the goods
needed to set the table in one trip rather than several.
Use a wagon to transport groceries from car to the house, a cart to
transport the laundry, foods from the fridge to the counter, etc.
There are a lot of strategies that can help conserve energy and reduce the
likelihood of fatigue induced injuries.
Try some of these simple tips:
Sit whenever possible. Use a tall stool at the sink to wash & prepare
food, use an adjustable ironing board as a work surface to sit at, wipe down
the bathtub while still sitting in it, or use a shower stool and hand held
shower for bathing.
Bathe before going to bed rather than in the morning. It takes less energy
to put on nightwear since there is much less of it and you will have less to
attend to in the morning. Always sit down while dressing and undressing.
Use good posture and comfortable work heights. While standing, the working
surface should be between waist & hips, while sitting, the surface should be
no more than 3 inches below your elbows. Don't work at a low counter that
causes you to bend over it. If the kitchen sink is low, place a pan under
the dishpan to raise it closer to you.
Stand & sit with spine erect.
While you are working avoid stretching & bending. Keep most commonly used
items within easy reach. Have long handles on the dustpan, bath brush, and
use tongs to reach for something on the floor.
Work in a well-lighted environment that is at a comfortable temperature
and has good ventilation. Wear supportive and comfortable shoes.
Use both hands for activities: setting the table, dusting, holding pots.
Avoid stress and rushing. Frustration and irritation increase fatigue.
Pace yourself; rushing leads to mistakes and accidents which then require
extra energy to clean up or resolve, not to mention the potential for
injury.
Flare-ups of symptoms including fatigue are a common experience for people
with HCV, which can drastically reduce your energy level and quality of
life. Prepare for these times by storing dried, canned and frozen
foods/meals available for the times when you are not able to get to the
store. Keep healthy snacks around the house and remember to eat small
frequent healthy meals. Skip unimportant tasks until a better time.
One of the most important strategies is to listen to your body. It is
important that you allow yourself to rest - pushing yourself unnecessarily
could prolong your "flare-up" and make you feel worse. We all know that
fatigue can cause depression and anxiety. Be prepared to indulge yourself in
enjoyable activities that require little energy, such as meditating,
reading, watching a video, knitting, etc.
It is 'ok' to recognize that you are depressed. It is not healthy to put a
positive spin on everything. Talk to family and friends - a friendly ear can
help with anxiety and depression. Talk to professionals and seek guidance.
Consider antidepressants - they can help with depression and energy. One of
the most important strategies people living with hepatitis C can adopt for
themselves is to join a support group.
Everyone experiences physical, mental and emotional changes throughout their
lives and must adapt accordingly in order to safely maintain their ability
to function. By practicing some of the above techniques you will reduce your
risk for injuries and conserve your energy for the things in life that are
most important to you.
Sources:
Arthritis Foundation website:
http://www.arthritis.org
American Occupational Therapy Association - website:
http://www.aota.org
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Hepatitis C Antibodies May Be Slow to Appear
|
SourceURL:http://abcnews.go.com
Mar 29, 2005-- NEW YORK (Reuters Health) - The
findings of a long-term study of injection drug users newly infected
with hepatitis C virus (HCV) show that antibodies to the virus may not
appear in the blood until two months after they have been infected.
These results "underscore the importance" of
nucleic acid screening of blood donations to prevent HCV transmission,
researchers say. The findings also reaffirm the need to follow HCV-positive
injection drug users long-term to check for viral persistence.
Among 179 HCV antibody-negative injection drug
users followed in the study, an "alarming" 34 percent became infected
despite risk reduction counseling, Dr. Andrea L. Cox, from the Johns
Hopkins Medical Institutions in Baltimore, Maryland, and colleagues
report in the medical journal Clinical Infectious Diseases.
As expected, individuals with early-phase HCV
infection were largely without symptoms. Virus in the bloodstream was
the earliest sign of HCV infection, preceding the detection of HCV
antibodies by 5 to 6 weeks, and in one case, by more than 12 months, the
investigators report. However, in all other cases, HCV RNA was detected
no more than 63 days before antibodies appeared.
Liver enzyme function measurements were also
elevated during early-phase HCV infection, but did not correlate closely
with HCV RNA levels or viral persistence. None of the infected patients
developed jaundice.
In cases of viral persistence, stable blood levels
of HCV RNA were noted in some individuals within 2 months after the
virus was first detected in the blood, while in others, it was not
apparent until more than 1 year later.
In individuals who cleared the virus from their
system, HCV became persistently undetectable as early as 94 days and as
late as 620 days after initial infection.
SOURCE: Clinical Infectious Diseases, April 1,
2005.
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