[Physician’s perception of ME/CFS sufferers as “difficult patients” - A mainly qualitative public health study from a patient perspective]

Abstract

Background: The disease myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is unknown to many doctors in Germany. Within the health system, significant deficits in dealing with ME/CFS patients are repeatedly revealed. Here, the doctor–patient relationship (DP relationship) plays a central role. Hence, the aim of the present study is to analyse in more detail the appearance and behaviour of doctors as an important factor in the DP relationship in ME/CFS from the perspective of those affected. Methods: As part of an exploratory qualitative survey, 549 adult ME/CFS patients (> 20 years; 456 women, 93 men) with a medical diagnosis of ME/CFS were asked about their subjective experiences with regard to the appearance and behaviour of the attending physicians. The sampling was done by self-activation and via the snowball principle. The questionnaire was structured analogously to a focused, standardized guideline interview. The questionnaires were evaluated as part of an extensive qualitative content analysis according to Mayring. Results: The participants named the contemptuous, unpleasant appearance and behaviour of the treating physicians as a central factor in a problematic DP relationship in ME/CFS. They reported a lack of empathy, sensitivity and social skills and felt that the doctors did not take them seriously and classified them as “difficult patients”. Their basic interactional needs were not taken into account, nor was there a relationship on an equal footing. In addition, a defensive attitude towards the patient was described. As a result, these factors affected the DP relationship. Conclusions: From the point of view of ME/CFS sufferers, the appearance and behaviour of the attending physician is a central aspect of an DP relationship that they experience as problematic. Based on these findings, further factors characterizing the DP relationship in ME/CFS will now be analysed. In addition, the health effects of a problematic AP relationship are to be examined from the point of view of those affected.