Date sent:      	Sun, 20 Jan 2002 

Quality of Life of Patients with Chronic Fatigue Syndrome

J of Chronic Fatigue Syndrome, Vol. 10(1) 2002, pp. 17-35

Guus L. Van Heck, PhD and Jolanda De Vries, PhD
Department of Clinical Health Psychology, Tilburg
University, The Netherlands.

Address correspondence to: Guus L. Van Heck, PhD, or Jolanda De Vries,
PhD, Department of Clinical Health Psychology, Tilburg University, P.O.
Box 90153, 5000 LE Tilburg, The Netherlands (E-mail:
mailto:g.l.vanheck@kub.nl or mailto:j.devries@kub.nl).

The authors wish to thank Tessa Op den Buijs for help with data
collection and Karin De Kok for her insightful comments on an earlier
version of this article.


ABSTRACT.
The purpose of this study was to compare quality of life between patients
with Chronic Fatigue Syndrome (CFS; n = 73) and healthy controls (n =
147), using a broad and generic quality of life assessment instrument,
the World Health Organization Quality of Life assessment (WHOQOL-100).

Participants were assessed on the WHOQOL-100, a self-assessment
instrument designed for quantifying 24 facets relating to quality of
life. These facets are grouped into six larger domains: physical health,
psychological health, level of independence, social relationships,
environment, and spirituality. The WHOQOL-100 also includes one facet
examining overall quality of life and general health perceptions.

Analyses revealed that the CFS group reported significantly lower levels
of quality of life than the control group on overall quality of life and
general health perceptions and on 22 out of the 24 facets of quality of
life. Compared to earlier studies that used health-status scales or
rather limited quality of life measures, this study generated a more
complete picture of the problems of patients with CFS.

The results suggest that the impact of CFS on the patients' lives is very
profound. CFS has a quality-of-life burden that affects a wide range of
factors inherent to quality of life. Questions that must be addressed by
future research are considered.


KEYWORDS. Chronic fatigue syndrome, quality of life, WHOQOL-100,
psychological assessment


INTRODUCTION
Many patients suffering from a wide range of diseases experience fatigue
that is not linked to specific tasks or activities (Bensing, Hulsman, &
Schreurs, 1996). Such chronic fatigue has a dramatic effect on quality of
life. Persons with chronic fatigue are inclined to undertake less and
lack sufficient energy and motivation even for those activities that they
conceive of as interesting. They loose their mobility and avoid social
contacts. Furthermore, they often don't take sufficient care of
themselves. Moreover, they have a wide range of affective and cognitive
problems such as pain, sleeping problems, stress, depression, lack of
concentration, a deteriorated resoluteness, and a weaker reasoning power
(Bensing et al., 1996).

Fatigue is the hallmark of the chronic fatigue syndrome (CFS). The key
feature of this disabling illness is persisting and disabling fatigue and
fatiguability, unexplained by a recognized medical diagnosis (Friedberg &
Jason, 1998; Johnson, DeLuca, & Natelson,1999). An ever growing body of
literature has pointed to a wide range of debilitating symptoms as well
as stressful life situations that individuals with CFS have to face.
These studies not only examine symptoms, health status, physical
functioning, functional disability, psychiatric disturbance, but also
subjective health, well-being, and quality of life; sometimes as isolated
phenomena, sometimes in various combinations (Bruce-Jones, White, Thomas,
& Clare, 1994; Demitrack & Greden, 1991; Friedberg, Dechene, McKenzie, &
Fontanetta, 2000; Komaroff & Buchwald, 1991; Kruesi, Dale, & Straus,
1989; Prasher, Smith, & Findley, 1990; Schaefer, 1995; Stewart, 1990;
Straus, 1988; Vercoulen et al., 1994; Wilson et al., 1994).

One of the investigations that measured explicitly health status in CFS
patients is a study by Antoni et al. (1994). Using multiple regression
analyses in examining various predictor variables, it could be
demonstrated that depression, physical symptoms, cognitive appraisals,
and coping behaviors accounted for significant proportions of the
variance in severity of illness burden, as indicated by the Sickness
Impact Profile (SIP; Bergner, Bobbit, Carter, & Gilson,1981), a measure
of the impact of illness and disability on daily life. All SIP scores
correlated positively with maladaptive coping. It appeared that the Sleep
and Rest, Home Management, and Alertness Behavior SIP scales were
positively related to the employment of maladaptive coping strategies.
The Social Interaction, Home Management, and Communications SIP scales
accounted for the largest proportion of variance in coping strategies. In
a study by Kroenke, Wood, Mangelsdorff, Meier, and Powell (1988) in adult
primary-care clinics, the SIP was used in patients with physically
unexplained fatigue. It was shown that patients had sizeable problems on
10 out of the 12 SIP scales. Similar results were found by Vercoulen et
al. (1994) and Schweitzer, Kelly, Foran, Terry, and Whiting (1995).

In a study with patients with CFS, a population-based control sample, and
disease comparison groups with hypertension, congestive heart failure,
type II diabetes mellitus, acute myocardial infarction, multiple
sclerosis, and depression (Komaroff et al., 1996), health status was
measured using the Medical Outcomes Study 36-Item Short-Form Health
Survey (SF-36; Ware & Sherbourne, 1992). This questionnaire consists of
eight scales measuring physical functioning, role limitations due to
physical limitations, bodily pain, general health perceptions, vitality,
social functioning, role limitations due to emotional problems, and
mental health. Compared with the general population control group, the
CFS group was impaired on all eight scales, especially in role
limitations due to physical limitations and vitality. With only a few
exceptions, the CFS group had more problems in nearly every area compared
with the five other disease groups. Buchwald, Pearlman, Umali, Schmaling,
and Katon (1996) found a similar pattern with the SF-36 with marked
impairment in patients with CFS for the physical functioning, role
functioning, social functioning, general health and body pain subscales.
Using four scales from the SF-36, assessing physical functioning, social
functioning, vitality, and psychological adjustment, Heijmans (1998)
demonstrated that patients with CFS scored low on the first three
measures of adaptive outcome. Using a modified version of an Interference
scale originally developed for assessing daily interference due to
chronic pain, Findley, Kerns, Weinberg, and Rosenberg (1998) could
demonstrate that somatic and psychological CFS symptoms affect daily life
in areas of work, family, social, and recreational functioning.

The studies mentioned above predominantly used instruments like the SIP
or the SF-36, which are clearly health status (capabilities) measures. As
such they assess the impact of disease on persons' functioning. A serious
problem, when using health status measures, is that lower levels of
functioning are equated with lower quality of life. However, such
outcomes can contrast sharply with findings in quality of life research
reflecting high perceived quality of life in spite of low levels of
functioning (O'Boyle, 1994; Sprangers & Schwartz, 1999). Hunt (1997),
discussing the scientific status of quality of life, has pointed at the
finding (Lerner, 1973; Pearlman & Uhlmann, 1988) that the same level of
health status can co-exist with a wide variety of existential states from
despair to tranquillity. Quality of life reflecting persons' perception
of their own life, is a broader concept than health status, incorporating
individual perspectives on life, roles, relationships and experiences. It
is a multidimensional construct that reflects individuals' overall
feeling of well-being and their view of the desirability of the life they
are living (Nord, Arnesen, Menzel, & Pinto, 2001). Recently, Myers and
Wilks (1999) examined patients with CFS using, in addition to a health
status measure (SF-36), a standardized non-disease-specific survey
instrument, the EurQol (Eurogol group, 1990). Patients reported a
moderate degree of emotional or psychological ill-health, especially with
respect to mobility and self-care. So, in spite of the fact that the
EuroQol has rather limited sensitivity (Brazier, Jones, & Kind, 1993), it
nevertheless revealed useful information about those aspects of life that
are "rooted in existentialism, the values of the individual and the fluid
dynamics of human attempts to cope with the exigencies of life" (Hunt,
1997, p. 209). Recently, a quality of life instrument has been
constructed that reflects a clear definition of the term quality of life
and a cross-culturally derived consensus on the components which make up
quality of life. This assessment instrument, the WHOQOL-100 (Whogol
group, 1995) appears to be a valid and internally reliable method for the
assessment of quality of life (Power, Bullinger, Harper, & the Whogol
group, 1999) with good sensitivity to change (O'Carroll, Cossar, Couston,
& Hayes, 2000). Therefore, the present study attempts to contribute to a
better understanding of patients with CFS by using the WHOQOL-100 in
order to look at quality of life in a more exhaustive way, scrutinizing
individuals' physical health, psychological state, level of independence,
social relationships, personal beliefs and relationships to salient
features of the environment.

 © 2002 by The Haworth Press, Inc. All rights reserved.


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