Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: a meta synthesis of qualitative studies

Abstract

BackgroundThe NICE guideline for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) emphasises the need for an early diagnosis in primary care with management tailored to patient needs. However, GPs can be reluctant to make a diagnosis and are unsure how to manage people with the condition.MethodsA meta synthesis of published qualitative studies was conducted, producing a multi-perspective description of barriers to the diagnosis and management of CFS/ME, and the ways that some health professionals have been able to overcome them. Analysis provided second-order interpretation of the original findings and developed third-order constructs to provide recommendations for the medical curriculum.ResultsTwenty one qualitative studies were identified. The literature shows that for over 20 years health professionals have reported a limited understanding of CFS/ME. Working within the framework of the biomedical model has also led some GPs to be sceptical about the existence of the condition. GPs who provide a diagnosis tend to have a broader, multifactorial, model of the condition and more positive attitudes towards CFS/ME. These GPs collaborate with patients to reach agreement on symptom management, and use their therapeutic skills to promote self care.ConclusionsIn order to address barriers to the diagnosis and management of CFS/ME in primary care, the limitations of the biomedical model needs to be recognised. A more flexible bio-psychosocial approach is recommended where medical school training aims to equip practitioners with the skills needed to understand, support and manage patients and provide a pathway to refer for specialist input.

“It´s incredible how much I´ve had to fight.” Negotiating medical uncertainty in clinical encounters

“…The strain of disparate health beliefs on doctor-ME patient relationships has previously been described (Bayliss et al, 2014). When doctors attribute MUPS conditions to mental and social causes, patients often perceive it as psychologising and trivialising their symptoms (Anderson et al, 2012; Åsbring & Närvänen, 2004; Rosendal et al, 2013; Schoofs et al, 2004).…”

Gastrointestinal dysmotility: A qualitative exploration of the journey from symptom onset to diagnosis

“…Dissatisfaction with medical encounters is a recurrent finding throughout research into patients experiences of conditions where there is no obvious physical cause and research in conditions with medical uncertainty describe that HPs find consultations similarly difficult to manage . Some research found HPs attributed negative personality characteristics to their patients rather than acknowledging their own lack of knowledge causing conflict and difficulties in the doctor‐patient relationships, and lack of coherence and difficulties in the doctor‐patient relationship may reflect the lack of confidence of HPs in diagnosing and managing this condition, which has been found in other research …”

“…14 Some research found HPs attributed negative personality characteristics to their patients rather than acknowledging their own lack of knowledge causing conflict and difficulties in the doctor-patient relationships, 40 and lack of coherence and difficulties in the doctor-patient relationship may reflect the lack of confidence of HPs in diagnosing and managing this condition, which has been found in other research. 36,48,50…”

From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory

“…Thus, a model to understand the illness phases and fluctuations in functional level is needed. General practitioners (GPs) may feel uncomfortable in making the diagnosis or defining the condition [37], and health professionals have a limited understanding of it [38]. Because appropriate advice and support from health care professionals may vary during the illness trajectory, there is a need to understand how the disabilities are experienced in different phases and how the severity of different disabilities is experienced by the persons affected.…”