Health & Medical Family Life & Health

Barriers to the Diagnosis of Chronic Fatigue Syndrome

Barriers to the Diagnosis of Chronic Fatigue Syndrome

Discussion


This meta synthesis highlights a number of ways that GPs have overcome the barriers to the diagnosis and management of CFS/ME in primary care. GPs who take a therapeutic and collaborative approach are able to diagnose and manage CFS/ME in a positive way, as recommended by the UK NICE guideline. This information is valuable in the development of the medical school curriculae and GP and health professional training to challenge the barriers that have led to the same inconsistencies in care for patients since the 1990s.

Comparison with Previous Literature


In line with the findings of a review completed by Elliot in the 1990s, our analysis suggests that the reluctance to diagnose and manage CFS/ME is based on scepticism and a lack of knowledge about the condition. Edwards et al. reports that a lack of training at medical school on conditions commonly called "medically unexplained" can cause frustration in the patient which leads to a breakdown of the GP-patient relationship. Larun and Malterud also highlight that a diagnosis and information on the condition was necessary for recovery, as without this, the patient can feel severely ill, yet blamed and dismissed and therefore disengage. This was also a theme in the current review which found that without a functioning relationship, communication breaks down and the GP is unable to learn from the patient's experiences or form a therapeutic relationship to manage symptoms. Patients are seen as difficult and un-cooperative which compounds the negative attitudes and stereotypical beliefs held by GPs about this group. Stenhoff et al., describe how such negative beliefs are then passed on to medical students, creating a new generation of doctors with the same stereotypical views about patients with CFS/ME. This maintains the barriers to the diagnosis and management of CFS/ME that have existed for the past 20 years.

Implications for Practice


The barriers to the diagnosis and management of CFS/ME highlighted in this study result in a significant burden of dissatisfaction for both patients and health professionals. However, at least in the UK, the expectation that CFS/ME will normally be diagnosed and managed within primary care means that GPs need to find a way to engage with these patients.

This meta synthesis highlights that only a minority of health professionals report that they are able to successfully diagnose and manage patients with CFS/ME in primary care. This finding suggests that there is a need to address the inadequacy of medical training about this condition. For example, the somatisation model, used by many GPs to explain the symptoms of CFS/ME, arises out of the failure of the biomedical model. It comes from reasoning that if there is no disease underlying the illness, the illness must be the manifestation of emotional distress. The bio-psychosocial model may be a better starting point for explaining and teaching medical students about conditions such as CFS/ME. This approach suggests a multi-factorial explanation for the condition, with interactions between biological, psychological and social factors maintaining symptoms. It focuses on a patient-centred consultation, using the collaborative and therapeutic skills shown to be valuable in this meta synthesis, to develop rapport and trust with a patient, listening and validating their experiences. Once the patient feels understood the GP can then go on to discuss the management of the condition. CFS/ME therefore needs to be presented to students in a positive way, with clear and simple messages. This could mean teaching students about these conditions first before they start to habitually use the biomedical model as a prototype for all conditions. Stenhoff et al. state that the first step in achieving this change is to address potential negative attitudes among trainers as sceptical attitudes towards CFS/ME can be learned by students.

An additional problem in the diagnosis and management of CFS/ME is the persistence of the term "medically unexplained illness", which indicates diagnoses can only be by exclusion and does not allow for a positive diagnosis. This can provide a reason for medical professionals to delay diagnosis and even opt out of treatment as they feel that they have nothing to offer. A fundamental shift in the perceived role of the GP is required to enable the holistic and therapeutic approach necessary to diagnose and manage CFS/ME in a positive way, as recommended by the NICE guideline.

Limitations


The aim of this study was to systematically describe other interpretative studies. However, the varying research designs and level of detail provided in the qualitative studies (Table 1) make it difficult to objectively synthesise results across every study. The synthesis also only found studies from developed countries (UK, USA, Canada, Australia, Sweden and Norway), which used convenience sampling in primary care settings, CFS/ME support groups, and patient organizations. It is possible that there are other relevant studies that were not identified by our search terms. In order to address issues of consistency of reporting for this metasynthesis, the authors focused on peer reviewed, published papers only. The grey literature was therefore not included.

Formal validation of the novel quality appraisal tool used was not conducted which may have led to bias within quality coding judgements, However, double coding procedures were used to enhance the reliability of coder judgements thereby reducing any subjectivity which had potential to influence the results.

A number of the authors of this paper were involved in some of the original studies included in the synthesis. This is an inevitable finding from the limited number of researchers working in the field. In order to reduce bias, four researchers who were not authors of any of the original studies were involved in the reviewing, data extraction and analysis stages.

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