Source: Patient Education and Counseling
Preprint
Date: May 15, 2008
URL: http://www.sciencedirect.com/science/journal/07383991
Obstructions for quality care experienced by patients with chronic fatigue
syndrome (CFS) - A case study
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Ann Marit Gilje(a), Atle Soderlund(a), Kirsti Malterud(b,*)
a Department of Public Health and Primary Health Care, University of Bergen,
Bergen, Norway
b Research Unit for General Practice, Unifob Health, Kalfarveien 31, N-5018
Bergen, Norway
* Corresponding author. Tel.: +47 55 58 61 33; fax: +47 55 58 61 30.
E-mail address: kirsti.malterud@isf.uib.no (K. Malterud).
Received 13 September 2007; received in revised form 31 March 2008; accepted
4 April 2008
Abstract
Objective
To explore obstructions for quality care from experiences by patients
suffering from chronic fatigue syndrome (CFS).
Methods
Qualitative case study with data drawn from a group meeting, written answers
to a questionnaire and a follow-up meeting. Purposeful sample of 10 women and
2 men of various ages, recruited from a local patient organization, assumed
to have a special awareness for quality care.
Results
CFS patients said that lack of acknowledgement could be even worse than the
symptoms. They wanted their doctors to ask questions, listen to them and take
them seriously, instead of behaving degrading. Many participants felt that
the doctors psychologized too much, or trivialized the symptoms. Participants
described how doctors' lack of knowledge about the condition would lead to
long-term uncertainty or maltreatment. Even with doctors who were supportive,
it would usually take months and sometimes years until a medical conclusion
would be reached, or other disorders were ruled out. Increased physical
activity had been recommend, but most of the informants experienced that this
made them worse.
Conclusion
Current medical scepticism and ignorance regarding CFS shapes the context of
medical care and the illness experiences of CFS patients, who may feel they
neither get a proper assessment nor management.
Practice implications
CFS patients' reports about patronizing attitudes and ignorance among doctors
call for development of evidence based strategies and empowerment of
patients, acknowledging the patients' understanding of symptoms and the
complex nature of the disease. The NICE guidelines emphasize the need of
patient participation and shared decision-making.
Keywords: Chronic fatigue syndrome; Patient preferences; Doctor-patient
relation; Diagnosis; Therapy; Qualitative research; Case study; Quality of
health care
1. Introduction
Chronic fatigue syndrome (CFS) is a disabling condition characterized by a
profound, persistent fatigue, which is typically worsened by minimal physical
or mental exertion [1,2]. Pain, cognitive impairment, sleep problems and
other additional symptoms usually occur (Table 1). The etiology is still
uncertain, but a variety of possible disease mechanisms including the immune
system, adrenal/pituitary axis, and psychological stress, have been proposed
[3]. The patients suffer from debilitating subjective symptoms, while
consistent, objective findings are lacking. No single diagnostic test can
confirm diagnosis, which is made on clinical grounds, requiring the presence
of the specific fatigue with associated features and exclusion of alternative
medical and psychiatric disorder [4]. No universal treatment has yet been
identified, but cognitive behavioral therapy (CBT) has shown benefit in
several studies [5]. Doctors and patient may hold opposing explanatory models
about the nature of the condition [6,7].
CFS is not the only condition where patients present with symptoms for which
no physical pathology can be found. This kind of problems are often labelled
as the medically unexplained disorders or physical symptoms (MUPS) [8,9].
MUPS challenge the traditional biomedical framework, where a disease is
supposed to have a structural origin, caused by an agent or event which can
be traced by a diagnostic test, and treated by counteracting the cause. The
biomedical conceptualization of disease fits some disorders, such as
streptococcal pharyngitis or other infectious diseases, while more complex
conditions with multicausal background or individualized treatment response
are less adequately incorporated by this model.
As a consequence, a broad range of chronic, disabling health problems cannot
be adequately understood by means of the biomedical framework alone. Doctors
and patients work hard with the subsequent uncertainty in different ways, and
tensions emerge when they meet. General practitioners report skepticism
towards CFS [10]. Doctors even say explicitely that they feel uneasy when the
biomedical ideals do not fit with the clinical reality [11,12]. They struggle
when their professional authority shall be managed under what is perceived as
scientific uncertainty [7]. The consequence is not beneficial for the
patient. Women with chronic pain presented accounts of being met with
scepticism and lack of comprehension, feeling rejected, ignored, and being
belittled, blamed for their condition [13]. Patients with CFS are often
dissatisfied with the quality of medical care they receive [14]. They report
experiences of stigmatization related to the unclear symptomatology of the
disorder, especially before receiving a diagnosis [7,15].
A functioning doctor-patient relationship is essential for quality care for
patients with any chronic, disabling health problem, including the process of
diagnosis, treatment, and support. Previous research has demonstrated some of
the challenges which may appear in encounters between doctors and patients
with CFS. After several encounters with distressed CFS patients in the last
author's practice, we felt a need to learn more about the perspectives and
needs for health care in this group of patients. We therefore conducted a
study to explore obstructions for quality care from experiences by patients
suffering from CFS.
2. Methods
2.1. Design, data, analysis
This is a case study based on analysis of data from multiple sources - a group
meeting, a questionnaire, and a follow-up meeting. The study was approved by
the regional committee for medical research ethics (Health Region West,
Norway) and The Norwegian Data Inspectorate. Participants in the group
meeting were recruited from the local patient organization, which we
considered as a purposive sample of people who might be especially aware of
questions related to quality care. Ten women and two men aged 22–54 years
(mean 41) attended the meeting. All had suffered from CFS for at least 1
year, one of them the last 20 years. Their diagnoses had been confirmed by
various doctors, and all the informants were on disability or rehabilitation
pension. None of the participants belonged to the practice of the third
author.
We conducted a group interview during the meeting according to focus group
principles [16]. The moderator (KM) invited the participants to share their
experiences from encounters with health care providers, and to describe
episodes from everyday life where the symptoms made a difference as compared
to life before illness onset. Findings regarding the latter have previously
been presented [17]. The conversation was audiotaped, transcribed, and
supported by field notes. Qualitative analysis was conducted with systematic
text condensation inspired by Giorgi [18,19]: (a) reading all the material to
obtain an overall impression and bracketing previous preconceptions; (b)
identifying units of meaning, representing different aspects of participants'
experiences of health care and coding for these; (c) condensing the contents
of each of the coded groups; and (d) summarizing the contents of each code
group to generalize descriptions and concepts concerning health care
experiences.
The questionnaire, intended to complement the interview, was designed by the
organization. Roughly it contained similar issues as the interview, expressed
as open-ended questions, and also some quantitative issues such as duration
of illness. Questions beyond the scope of this study were also included, such
as beliefs about etiology. Due to the limited amount of time, these matters
were not introduced in the interview, and were omitted from analysis.
The follow-up meeting 1 year later was attended by 5 of the 12 participants,
all of them women. The major findings from the initial analysis were then
presented and discussed in depth. Fieldnotes from this meeting and the
questionnaires were used to clarify and supplement issues from the group
interview.
3. Results
CFS patients said that lack of acknowledgement could be even worse than the
burden of symptoms. They wanted their doctors to ask questions, listen to
them and take them seriously, instead of behaving degrading or patronizing.
Many participants felt that the doctors psychologized too much, interpreting
the exhaustion as depression or trivializing the symptoms. The participants
described how doctors' lack of knowledge about the condition would lead to
long-term uncertainty or maltreatment. Even with doctors who were supportive
and believed in the patients, it would usually take months and sometimes
years until a medical conclusion would be reached, or other disorders were
ruled out. Increased physical activity had been recommended, but most of the
informants experienced that this made them worse. These findings are
elaborated below.
3.1. Lack of acknowledgement can be even worse than the burden of symptoms
Several participants remarked that although the symptoms were terrible, even
worse was not being believed by their doctors. When all tests came out as
normal, they would become labelled as healthy, even though their level of
functioning was deteriorating. Repeated stories referred to doctors who
appeared to have more confidence in themselves than listening to the
patients. Our participants wanted the doctor to ask questions, listen to
them and take them seriously. Instead, there were many examples of events
perceived as degrading by the patients:
'Sometimes you meet such an arrogant attitude that you
get... you get scared of them.' (#4)
Yet, those who were satisfied with their GPs, told about doctors who during a
long-term relationship had showed that s/he believed in them. Although few of
these doctors had given a diagnosis, they were perceived as examining the
patients thoroughly and loyally accepted their information. One participant
told that the doctor had read an article about postviral fatigue syndrome and
hypotension, and sent it to her. A woman explained her positive experiences:
'I guess I've been lucky, because my GP knew me from I
was a kid. She knew that if I said I was ill, I was ill.' (#2)
Another woman had come to the emergency room due to pain she did not relate
to CFS. When they heard that she was a CFS patient, she was sent back home.
She felt she was rendered suspect because of her illness. After 2 days with
severe pain she was operated in the uttermost moment. Many participants felt
that the doctors psychologized too much. One woman got ill as a child. She
was therefore automatically labelled as a victim of problems at home or in
school. Another one met a doctor who believed that she tried to escape from
her job situation through her symptoms. The exhaustion would quickly be
interpreted as depression:
'And then I met a doctor who was convinced that I was
depressed. He asked if I cried a lot. In fact, I didn't cry more
than I laughed during that period. So crying was not a
problem. Then I said: 'I can't do anything at all.' Well, then
of course I was depressed because I didn't manage anything,
or was in lack of initiative. But that was not the problem. I
wanted to do all sorts of things, but as soon as I tried, I
became exhausted and had to go to bed again.' (#6)
Generally, the participants felt that the doctors' interest for them and
their illnesses diminished as time went by and no cause or treatment was
found. One of them was told by his doctor that he would have been a lot more
interesting if he had suffered from a heart disease. Another participant
reported giving an article about CFS to his internist. A few weeks later he
received a bill from the physician, who demanded a fee to study the article.
One woman mentioned that when she gave her doctor some information material
about CFS, he was not willing to study it:
'The doctor said: 'I don't think I have the time to study
this'. You'll have to find another GP.' (#1)
Doctors were often perceived as inactive, wanting to get rid of the patient
as quickly as possible. The participants wished to be taken seriously, even
being women in their forties. The woman above added that she felt that her
symptoms were trivialized:
'...they did not listen to me because I was of no interest. I
was a typical housewife at a difficult age. Probably
menopausal symptoms and things like that. Was a bit
stressed and frustrated. Had grown-up kids and felt
uncomfortable, and didn't find myself and so on.' (#1)
3.2. Lack of knowledge can lead to long-term uncertainty or maltreatment
A common impression among our participants was that their GPs held a low
level of knowledge about CFS. Since they did not understand, they could not
give any advice. Two women told about doctors who never examined them
properly, even after having seen them for several years, claiming that they
did no efforts at all to find out whether they were ill or not. Some of the
participants were not even able to tell their doctor what was wrong with them
before he gave them a prescription It seemed to represent an 'easy exit' for
the doctors.
'First I came to the emergency room. I had two red eyes, I
didn't manage my job, I couldn't remember what to do, I
couldn't walk up hills. Everything was wrong. They looked
me in the eyes and said: 'Nyeah, it's probably a virus. Here
are eye drops if it is bacteria. Keep on working.'' (#6)
Even with doctors who were supportive and believed in the patients, it would
usually take months and sometimes years until a medical conclusion would be
reached, or other disorders were ruled out. In the meanwhile, the doctor
hoped that the symptoms would disappear. A woman who felt well taken care of,
said:
'When the doctor is so confused, it is important to refer
people to specialists. What concerns this illness, they said to
me at the university hospital: 'You have listed a whole lot of
neurological symptoms. Now we'll take some tests, and then
we'll exclude other things, other dangerous conditions.
Exclude MS, cerebral tumour etc.'' (#8)
Many of the GPs had more or less reluctantly referred their patients to
specialists for investigation, and most of our participants had been seen by
neurologists at a hospital department with a special interest in CFS. This
was usually the place where the diagnosis had been concluded. The neurol-
ogists had also offered advice and guidance about diet and training. Similar
levels of knowledge were called for among GPs:
'I don't believe that anything will happen before one day
there is a sign at the door of a doctor: 'Specialist of ME.'' (#8)
Both specialists and GPs had recommended increased physical activity. The
patients were encouraged to go to work, do exercise, and go out to see other
people. Many of them had been advised to stretch their physical limits and
referred to physiotherapists for exercise. However, most of the informants
had experienced that this would worsen their condition. Some of them thought
they would have been better today if they had not followed this advice. One
participant was referred to a rehabilitation center, and this led to a total
collapse. Still he was recommended to keep on training:
'I said: 'It's crazy! I have problems walking up a hill, and
now I'm going to a center for physical training!' Ok, I'd try.
So I went. And after two days I collapsed.' (#4)
4. Discussion and conclusion
4.1. Discussion
4.1.1. Validity and transferability
This is a case study approaching experiences and associated attitudes of CFS
patients who belong to a patient organization. Material from the interview
and the questionnaire confirmed that all participants had undergone
thoroughly diagnostic testing at the hospital. We conclude that our sample
covers a sufficient content validity regarding the CFS diagnosis. We were
interested in the stories from people with a special awareness for quality
care, realizing that CFS patients who are members of an organization, may
differ from other CFS patients. On one hand, they may represent the most
serious and disabling stages of the disorder, on the other hand, they may be
more active and articulate than patients who do not organize. Membership
might represent a bias of bad health care experiences. We therefore took this
as a challenge to look across the material for variations and nuances, and to
acknowledge substantial wishes for improvement of health services, regardless
of their quantity or distribution. We do not claim transferability of these
experiences to all CFS patients, yet consider the phenomena described as
relevant for any medical encounter where the patient suffers from a medically
unexplained disorder. The better part of reality would probably be more
precicely described by a different sample The moderator's initial dedication
for improvement of health services for this group of patients may have
facilitated trust and alliances with the participants by confirming an
ethical commitment to their expressed needs.
The number of participants present in the group interview (more than we had
expected!) limited the amount of information from each of them, and some
remarked afterwards that it was too brief. However, the atmosphere was
relaxed, and the associative creativity during the interview contributed to a
rich and diverse material. Data collection was limited to one group meeting,
which however presented a broad diversity of experiences. Our methodological
approach was not aiming for saturation, since the study did not hold an
ambition to describe all possible experiences. Concentrating on stories from
members of the organization, we were fully aware that other groups may have
yielded different data. The information obtained through the questionnaire
and the follow-up meeting validated and complemented the main findings.
4.1.2. What is known from before - what does our study add?
Patients with persistent, subjective symptoms without objective findings,
such as CFS and other MUPS, hold a low ranking in the medical hierachy. While
conditions like myocardial infarction, leukaemia and brain tumour are ranked
highest by doctors, fibromyalgia and anxiety neurosis are among the lowest
[20]. Such attitudes are reflected in the comment from the participant in our
study, who said that she felt she was of no interest for her doctor. Edwards
et al. have described patients' feeling of being let down and disbelieved
when seeking help [21].
Our study also confirms previous studies about experiences of stigmatization
in patients with CFS encountering health care [7,14,22]. Some doctors
characterizes CFS patients by lacking stoicism, and use pejoratively
stereotypes to describe certain personality traits supposed to cover the
whole group of patients [10,12,23]. Patients perceive such attitudes as
questioning their morality and credibility, asking whether they are really
sick [12,22,24].
Yet, although acknowledgement of symptoms as well as person is necessary for
quality care, it is not sufficient. The participants in our study challenge
Deale and Wessely's understanding that medical care is evaluated less on the
ability of doctors to treat CFS, and more on their interpersonal and
informational skills [14]. Understanding the CFS condition itself is urgently
called for by the participants in our study, who want their doctors to be
better informed and less ignorant in order to provide adequate counseling.
Within this field of experienced uncertainty, a stronger commitment to
evidence based practice might improve the doctors capacity to give his or
her patients adequate information about CFS [22,25,24].
Our participants emphasize the specific importance of reaching a diagnosis
for coping [7] by sharing their experiences from the frustration appearing
when time goes by and no conclusion regarding diagnosis or treatment has been
achieved. Previous studies have emphasized patients' view on diagnosis
[11,26,27], not only as legitimation of the condition, but also as a path to
reconciliation and coping [7,28]. The NICE Guidelines recommend diagnosis to
be reached within 4 months for adult patients [4]. Considering a CFS
diagnosis as a provisional tool for understanding and reconciliation may
support recovery for the patient, while attributing the diagnosis a warning
about any physical activity would probably function counterproductively. The
way the diagnosis is presented, is therefore crucial for quality care.
Our study adds to the knowledge base on doctors' uncertainty - when you do
not know what to suggest, you therefore have nothing to offer [11]. Analysis
revealed stories about doctors who lack knowledge but yet refuse being
provided with information, and doctors who propose treatment which makes the
patient feel worse. While physical activity is beneficial for a lot of health
problems, the core symptom of CFS is actually postexertion fatigue and
malaise [1]. Movement therapy based on carefully limited workload has shown
promising results for CFS patients [29], and graded exercise therapy has been
useful for some of these patients [1]. However, patients with this condition
should not be adviced to undertake vigorous exercise [4].
Our participants demonstrated some of the problems which can be experienced
by patients when doctors do not know what to do. They demonstrate specific
areas where quality of care can be improved by implementing evidence and
guidelines among healthcare professionals. Special efforts would yet be
needed to develop adherence to guidelines within a field where GPs seem to
have strong opinions about the 'real' nature of the disorder [30,10,31].
4.1.3. Conflicting explanatory models on MUDS
Our findings indicate that quality care for CFS patients suffer from more
than indifference and ignorance. The tensions arising from conflicting
illness understanding seem to create serious obstacles in the interaction
between doctors and patients with CFS. Conflicts may arise when the two parts
have different beliefs about the nature and cause of the illness. According
to Kleinman, explanatory models are 'the notions about an episode of
sickness and its treatment' employed by all the persons involved in the
clinical process, including beliefs about etiology, time and mode of onset of
symptoms, pathophysiology, course of sickness, and treatment [6]. Some of the
participants in our study felt that they were unduly labelled as depressed,
perceiving this as a patronizing provocation, never having felt psychological
problems, and being convinced of the bodily character of their symptoms.
We did not interview the doctors met by our participants, and hence do not
know what actually took place. Nevertheless, the reported events correspond
well with the sceptical viewpoints towards the diagnosis presented by doctors
in other studies [10,12,31]. Previous research has described similar
uncreative negotiations as 'the shame-blame-game', where all interaction
concentrates on body-mind arguments about whether CFS is 'really' a
psychological or a physical condition [24].
Burton turns down the idea that most MUPS are the result of a single process
of somatization or mental distress. He concludes that in these conditions,
there is good evidence for the impact of the interaction between physiology,
personality, life experiences, health cognitions, and healthcare experiences
[9]. Recent biopsychosocial models focusing feedback systems and homeostasis,
such as The Cognitive Activation Theory of Stress (CATS) [32], transcend the
dichotomous perseverance on classifying CFS as either body or mind [10].
Sustained activation has been suggested as the underlying mechanism for
processes underlying subjective health complaints [33]. Within the framework
of these models, even measurable bodily processes are accessible for
cognitive input.
4.2. Conclusion
Our findings support a hypothesis that the current medical scepticism and
ignorance regarding CFS shapes the context of medical care and the illness
experiences of CFS patients, who may feel they neither get a proper
assessment nor management. GPs need more knowledge and a broader
understanding of the condition, making it possible to individualize the
available strategies for diagnosis and management according to the patient's
capacity and responses.
4.3. Practice implications
Being met with dignity and respect is especially important for people with
chronic illness. However, doctors' feelings of helplessness and controversies
about explanatory models may transform into behavior perceived as degrading
by the patient [8,34], thereby obstructing quality care. The body-mind
controversies arising from the biomedical model seems to be an especially
important barrier for finding common ground between patients with CFS and
their doctors. Development of comprehensive explanatory models which
transcend the dichotomous explanatory models [32] can help doctors and
patients to expand their understanding of the mechanisms underlying the
complex symptomatology of CFS. Elaborating a diversity of strategies involved
in the diagnosis and treatment plans of primary care problems that are
uncertain and complex could also contribute to better care of CFS patients
[35].
However, many doctors are not yet even prepared to acknowledge the CFS entity
itself, but regards it as a dubious category [31]. Doctors' reluctancy
towards giving this diagnosis is known from before [11,36], and confidence
with making a diagnosis and management is low [37]. According to the British
Chief Medical Officer Kenneth Calman (2002), chronic fatigue syndrome should
be recognized as a real entity, which is distressing, debilitating, and
affects a very large number of people [38].
To the patients the diagnosis may function as a tool that enables them to
tell other people what is wrong with them [15,11]. Receiving a diagnosis was
mentioned by our participants as a very important aspect, since the
uncertainty during a period of increasingly debilitating symptoms may add
strongly to the burden of suffering for the patient. Our findings indicate
that GPs need to know more about why and how the diagnosis of CFS should be
set. According to clinical guidelines, the CFS diagnosis can be concluded by
the typical history of excessive, characteristic and lasting fatigue, when
adequate differential diagnoses have been thoroughly excluded [4]. Often, a
specialist referral is necessary. When diagnosis is clear, there is no
apparent medical reason to withhold it from the patient. On the contrary, a
diagnosis may constitute the starting point of a process of recovery and
reconsiliation [39].
Intervention studies indicate that cognitive behavioral therapy and graded
exercise therapy may be helpful for some CFS patients [5,40]. We still do not
know how these modalities can provide the most benefit, and for whom. GPs
need to learn how to offer evidence based treatment modalities such as
cognitive behavioral therapy to patients with CFS without confining the
disorder within the concepts of somatization or other kind mental diseases
[9,41]. Our informants complained about the exercise recommendations which
had seemed to make their symptoms worse. Since CFS per definition is a
condition where postexertional malaise is one of the typical symptoms,
undifferentiated physical exercise appears to be a questionable
recommendation. However, the NICE Guidelines present a feasable program for
individualized and tailored physical activity which could safely be offered
to CFS patients under monitoring of effects and side effects [4].
The NICE guidelines emphasize the need of patient participation and shared
decision-making [4]. CFS patients' reports about patronizing attitudes and
ignorance among doctors call for development of evidence based strategies and
empowerment of patients, acknowledging the patients' understanding of
symptoms and the complex nature of the disease.
Table
Table 1. CDC 1994 case definition of CFS [2]
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Clinically evaluated, medically unexplained fatigue of at least 6 months
duration that is
New onset (not life long)
Not result of ongoing exertion
Not substantially alleviated by rest
A substantial reduction in previous level of activities
The occurrence of four or more of the following symptoms
Subjective memory impairment
Sore throat
Tender lymph nodes
Muscle pain
Joint pain
Headache
Unrefreshing sleep
Postexertional malaise lasting more than 24 h
------------------------------------------------------------------------
Exclusion of all relevant differential diagnoses.
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