How do patients with rheumatic disease experience their relationship with their doctors?: A qualitative study of experiences of stress and support in the doctor–patient relationship
Introduction
Over the past 25 years, we have seen a growing interest in research on communication between physicians and patients. Although most of this literature has focused on communication from the doctor’s perspective, it has been documented that specific qualities of the interaction between physicians and patients are related to patient satisfaction, adherence and health outcomes [1], [2], [3]. A review on the relationship between physician communication and health outcome [4] concluded that a physician’s communication style, characterized by showing support and empathy towards the patient, is associated with less patient anxiety and possibly even symptom resolution. The author pointed out that patient anxiety, and even pain, might be reduced if the patient is encouraged to ask more questions and is actually successful in obtaining information about their condition and on ways to cope with specific health problems.
We report a study of patient preferences in the relationship between patient and physician; what features of the consultation do they perceive as stressful and/or supportive? Two different categories of patients with rheumatic diseases were chosen for this study; one with a non-inflammatory condition characterized by widespread musculo-skeletal pain, such as fibromyalgia, and one with a confirmed diagnosis of an inflammatory condition (rheumatoid arthritis (RA) or ankylosing spondylitis). The latter group of patients was recruited from an in-patient rheumatological rehabilitation department. Both groups of patients were perceived as ‘difficult’ from the health personnel perspective. The in patients who were included in the study were referred to the rehabilitation unit because of their need for specialized rehabilitation, often with an emphasis on psychosocial needs. The patients with non-inflammatory widespread chronic pain represented a category of patients who often report problematic relationship with their doctors. Fibromyalgia is rated to have a priority of care among experienced doctors and other health care personnel [5]. Many doctors also report experiences of personal failure, frustration and feelings of being unable to help this group of patients [6]. The patients are often experienced as ‘difficult’ and their symptoms are in some cases referred to as somatization. The patients also report that their experiences with doctors make their health problems worse [7].
We were interested in comparing the experiences with health personnel of patients with non-inflammatory and inflammatory rheumatic diseases. We believed that patients with conditions such as RA or ankylosing spondylitis would report a less stressful relationship with their health personnel, because diseases such as RA are well accepted somatic conditions. We took it for granted that these patients would feel that they were taken seriously by the health personnel.
On the other hand, patients with severe sequelae from chronic diseases such as RA might have other concerns in their relationships with health personnel [8]. Daltroy et al, showed that roughly a fifth to a half of rheumatic patients on a typical visit have psychosocial problems due to their disease, and these are frequently not detected by their physician [9].
Moreover, it has been shown that RA patients are sensitive to interpersonal stress, and stressful relations with those close is related to increased pain and joint tenderness [10]. Many rheumatic conditions have no known cause or cure. Doctors and patients often have very different beliefs and ideas about particular diseases. These different beliefs and ideas may have consequences for the communication between them and cause stress. This may be because of reluctance on the part of the patient to ask questions that seem irrelevant or time consuming, or reluctance on the part of the physician to ask about the patient’s assumptions or psychosocial needs [11].
We therefore wanted to investigate which factors in the relationship with health personnel patients experienced as stressful and which they felt as being supportive. This was to increase our knowledge of the sources of stress and support in the medical encounters of those patients with rheumatic diseases.
Section snippets
Data collection
A focus group interview format was chosen for data collection. In a focus group, a small number of informants are interviewed in a single interview session, according to a semi-structured interview guide. A number of interviews are performed in subsequent groups until little or no new information on the relevant topic emerges [12].
Seven groups of patients with three to five people in each group were interviewed. We conducted three interviews with in hospital patients with RA or ankylosing
Results
At the beginning of the interview we indicated an interest in all kinds of provider–patient relationship. Because more than two-thirds of all references to providers were made to doctors, as primary care physicians and rheumatologists, we have chosen to focus on this relationship in this study. The patients with an inflammatory condition primarily talked about the rheumatologists as their most important physicians, and the patients with non-inflammatory conditions most often referred to their
Discussion and conclusions
In this study, we have seen some parallels and some major differences between doctor–patient relationships for in out patients with non-inflammatory widespread chronic musculo-skeletal pain and for in patients from a rheumatological rehabilitation department, with RA or ankylosing spondylitis. Both groups of patients clearly experienced that the relationship to their doctor was important in the care of their health problems.
Whereas the patients with RA or ankylosing spondylitis emphasized the
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