Chronisch Vermoeidheidssyndroom: diagnose, behandeling en ...

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72 Chronic Fatigue Syndrome KCE reports 88 5.2.2 Patients relations with others 5.2.2.1 Social relations CFS patients, among them a lot of women, felt they were stigmatized. Firstly, their moral characters were called into question due to the absence of visible external signs of the illness and negative diagnosis tests. Many patients believed that evident external symptoms would have enhanced their credibility. Moreover, the diagnosis, difficult to establish came in some cases very late. The contacts with the social insurance office, for example, were often experienced as problematic (nonchalance and doubt about patients credibility and moral attitude) due to the condition not yet having been verified with a diagnosis. Patients felt being accused of lying about their distress and trying to avoid their duties, especially in relation to work. 155 A lot of patients experienced a significant decrease in their social life and in time spent in recreational activities or hobbies. CFS patients often lost friends and the support of their family. Decreased social and recreational functioning may be associated with high rates of mood disturbances. 161 In some cases, illness was described as a reason for divorce or separation with family members. 159 5.2.2.2 Relations with doctors and other caregivers PATIENTS’ POINT OF VIEW In Schoof’s study, interviewees indicated how many healthcare providers lacked knowledge about their condition or did not believe in. They were really frustrated when healthcare providers were uninformed. 156 Patients also expressed that their credibility had been questioned by the caregivers, in particular by doctors, often after tests and other examinations did not indicate any pathological problems. 154 While doctors were positively disposed prior to the test results, they adopted sceptical attitudes when negative test results were received. Some doctors, in advance and without having carried out proper examinations, categorized patients’ problems as fictitious or related to psychological reasons, 155 thinking patients were lazy or irresponsible. 156 Moreover, sufferers described their experiences of being denied healthcare and legitimacy through bureaucratic categories of exclusion as dependent upon their lack of biological facts. 160 In USA, the American biomedical system demands disease categories (International Classification of Diseases) before compensation, and diagnosis before treatment. Consequently, without codes, people are at risk to be abandoned out of reach of any social safety net. Without clear definition, insurance companies, for instance, can recategorize illnesses arbitrarily as physical or mental, with the advantage to them that they can pay less for classified mental illnesses. 160 In UK, a study conducted among CFS patients referred to a specialist clinic reported that two-thirds of all interviewees (N=68 patients) were dissatisfied with the quality of care they received. 163 These patients described delay and confusion over diagnosis. Whereas patients attributed their symptoms to a physical cause, doctors believed CFS to be psychological or even psychiatric. Such disagreement led to dissatisfaction over diagnosis and treatment. Patients considered medical advices consequently inadequate or conflicting and felt doctors dismissive, sceptical or openly disbelieving. 163 Even in the patient support literature, patients considered the mention of psychiatric disorder as a dismissal of their complaints. 84 PHYSICIANS’ POINT OF VIEW Asbring and Närvänen studied physicians perspectives on CFS patients. 164 They interviewed 26 physicians who all had some experience of either CFS. Firstly, physicians emphasized the distinction between a disease and an illness. They expressed scepticism for conditions characterised by a lack of objective measurable values that would make it possible to establish the cause of the condition, i.e. which cannot be characterised as a disease. CFS which cannot be verified from objective measurable values was defined as illness and thus considered as less threatening than health problems with disease status. CFS symptoms were viewed by physicians to be ones that can be lived with.
KCE Reports 88 Chronic Fatigue Syndrome 73 According to interviewees, CFS patients had not previously experienced more severe conditions and often exaggerated the severity of their problems. Secondly, physicians considered that there was a discrepancy between how CFS patients expressed their symptoms (fatigue and pain) and how a sick person, according to their personal point of view, is expected to look and behave. To be accepted as a sick person, appearances seemed to be really important. Consequently, they felt doubtful about the veracity of the patient’ condition; patient’ morality is actually called into question particularly to decide if a patient has to put on the sick list. 164 Particularly, several physicians expressed hesitation about setting the diagnosis (CFS) afraid that the patients may become too illness-fixated. Physicians themselves viewed CFS patients as showing scepticism regarding the physician’s knowledge of their condition and the possibilities of doing something for them. 156 This perception was confirmed in a larger postal survey addressed to 1 054 GPs in UK (number of respondents = 811), 165 where only 49% of respondents correctly identified key clinical features of CFS and 63% of GPs selected either these key features or other most frequent clinical features. Among respondents, 28% of GPs did not accept CFS as a recognizable clinical entity and adopted less positive attitudes towards patients than GPs who accepted CFS a real entity. Only 12% of GPs enjoyed working with CFS patients. 165 Even when doctors recognise psychological or social factors, they do not automatically consider referral for mental health interventions because they are unfamiliar with the interventions or think them unavailable or unnecessary. 166 5.2.3 Coping strategies 5.2.3.1 Withdrawal A withdrawal is a strategy to avoid the demands and expectations of other people. Particularly, patients tend to avoid people who had reacted negatively to them and their illness. They compensated for the avoidance of certain people by a greater intimacy with, and closeness to, others. Some patients also withdrew from social life when they could not cope with meeting people or participating in various activities due to fatigue and poor health or found it difficult to plan activities in advance when their condition was unpredictable from one day to the next. 155,159 When patients felt that they were called into question by doctors or caregivers, they hesitated to seek care or waited as long as possible before contacting them again, preferring to turn to caregivers within alternative medicine. 155 5.2.3.2 Concealment Another strategy used by patients to manage their situation is to try to participate in social life instead of withdrawing from it, by concealing the illness, and act as a happy, healthy, and normal person, only to almost collapse later when they arrive home. Another strategy leads to controlling information and not telling others about the illness, in order to diminish the risk of stigmatization and to maintain a desired identity. An inverse way of managing the situation is to actively spread information about the illness to colleagues, friends, and closest family members. 155 Many sufferers try to educate others, including their doctors through facts. They use the internet to share tips, medical articles, and strategies for making their doctor understand their condition. 160 5.2.3.3 Communication with other sufferers A lot of social movements emerge to help and support CFS people. These illness movements have websites and Usenet discussion groups. Usenet is a global, decentralized, distributed internet discussion system. Users read and post public messages (called articles or posts, and collectively termed news) to one or more categories, known as newsgroups. Usenet resembles bulletin board system. The postings are public commentary with no access restrictions and are most similar to online web logs (or blogs).
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