Complete text of article
Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS) - A case study
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 neurologists 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)
(CONTINUED...)
No comments:
Post a Comment