Long-term effects of a shared decision-making intervention on physician–patient interaction and outcome in fibromyalgia: A qualitative and quantitative 1 year follow-up of a randomized controlled trial

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Abstract

Objective

Fibromyalgia syndrome (FMS) patients and their doctors frequently complain on interaction difficulties. We investigated the effects of a shared decision-making (SDM) intervention on physician–patient interaction and health outcome.

Methods

Sixty-seven FMS patients of an outpatient university setting that had been included in a randomized controlled trial were followed up. They were either treated in an SDM group or in an information group. Both groups saw a computer based information tool on FMS, but only the SDM group was treated by doctors which underwent a special SDM communication training. A comparison group of 44 FMS patients receiving treatment as usual was recruited in rheumatological practices. We assessed patients and their doctors using a combined qualitative and quantitative approach. Patients and doctors were followed-up after 3 months (T2) and after 1 year (T3).

Results

The significantly best quality of physician–patient interaction was reported by patients and doctors of the SDM group, followed by the information group. Coping had more often improved in the SDM group than in the information group. However directly health related outcome variables had not improved in any of the groups at T3.

Conclusion

An SDM intervention can lead to an improved physician–patient relationship from the patients’ and from the doctors’ perspective.

Practice implications

It should be considered to include SDM in standard care for FMS patients.

Introduction

Patients suffering from fibromyalgia syndrome (FMS) are often dissatisfied with their physicians [1], [2] and doctors characterize interaction with FMS patients as challenging and difficult [3], [4], [5].

FMS is a common chronic condition characterized by widespread pain of the musculoskeletal system and the existence of tenderpoints [6]. Often patients additionally feature functional symptoms such as sleep disturbance, fatigue, headache, dizziness, cold intolerance, irritable bowel syndrome, etc. [7], [8] and psychological comorbidity is high [5], [9]. Up to 3.4% of the population and mostly women are affected [6], [10], [11]. FMS causes much controversy among physicians concerning its etiology and pathogenesis. Studies support somatic as well as psychological influences and a multifactorial bio-psycho-social model finds the most support [12], [13], [14], [15]. FMS is difficult to treat because there is no cure available yet. Treatment aims at temporary alleviation of symptoms [16], at improvement of coping behavior [17], and has to consider the physician–patient relationship [15], [18].

In the medical context FMS patients often experience skepticism, lack of comprehension, and rejection by their physicians [2]. On the average 5 years elapse after generalization of pain before a diagnosis of FMS is finally made [19]. The constant search for relief can lead to continuous disappointment and doctor shopping [2], [18]. Patients relate that their symptoms are belittled and not taken serious due to the lack of objective proofs. The fear to be mistakenly seen as healthy hypochondriacs can lead to considerable efforts with the aim of enhancing their credibility [2]. Other unfavorable encounters with the medical profession include being blamed for their disease, confronted with stigmatizing psychological explanation models, and too demanding therapeutic recommendations [20]. FMS patients often spend all their strength on struggling, quarrelling and asserting themselves during consultations and tend to use “war” and “legal” metaphors in their descriptions of medical encounters [2].

The irritation seems to be reciprocal because doctors describe FMS patients as time-consuming, demanding, emotionally challenging, and draining [21]. FMS can constitute a challenge to their professional identity since they are chiefly trained to manage clearly defined somatic diseases with objectively measurable physiological dysfunction. The uncertainty as to pathogenesis, diagnosis, and the lack of effective cures can elicit feelings of insufficiency, helplessness, guilt, and frustration [3], [22]. These negative feelings can cause doctors to want to withdraw from treatment by either limiting the amount of care provided or by referring these patients [5], [16].

Different illness concepts of doctors and patients may be a source of distress. The doctors’ predominant bio-psycho-social understanding of the problem clashes with the patients’ prevailing assumption, that a disease is either exclusively physical or exclusively psychological in origin and phenomenology [20]. Unrealistic treatment expectations of patients can constitute another conflict between doctor and patient. Physicians and FMS patients often have differing views on the importance of certain treatment aspects [18]. However patients’ satisfaction heavily depends on whether their expectations are met and their preferences are considered [23].

This leads to the deliberation that a shared decision-making (SDM) model could be a potential solution for improving the charged physician–patient relationship. SDM stresses the idea of partnership between doctors and patients when it comes to making medical decisions. As to patient autonomy and responsibility for medical decisions, the SDM concept can be found in a mediating position between the paternalistic approach and the informed choice concept [24], [25], [26], [27]. According to Elwyn et al. [26] SDM is most feasible in situations of professional equipoise when in certain clinical scenarios several legitimate choices exist and the clinician does not have a clear preference about the treatment choice to make. One important prerequisite for SDM [24] is the mutual exchange of information between doctor and patient, because the knowledge of both is needed to manage an illness successfully. The doctor contributes his medical expert knowledge on causes of disease, symptoms, treatment options, and prognosis, whereas the patient discloses his expectations, preferences, fears, attitudes to risk, values, experience of illness, and social circumstances [28]. After a process of negotiation with a final agreement, doctor and patient plan steps to put their shared decision into action.

So far there are no studies available that investigate the implementation of SDM principles in the treatment of FMS patients. A burdened physician–patient relationship is a major problem in the treatment of FMS patients and we expect the SDM model to be a potential solution. Therefore, we tested the effectiveness of SDM in FMS in a randomized controlled trial.

Immediate effects of the SDM intervention have been positive and are presented in a different paper [29]. In this paper we look at the long-term effects of SDM on physician–patient interaction, the decision-making process, coping behavior, and health related outcome variables.

Our main hypothesis on long-term effects of SDM is that SDM persistently improves physician–patient interaction with FMS patients because once a positive working alliance with the patient is established it should endure.

Secondary endpoints are measures related to the decision-making process, coping behavior, and directly health related outcome measures.

Section snippets

Study design

In a randomized controlled trial we compared an SDM group with an information group. Both of these randomized groups were seen in an university outpatient setting.

All patients applying for a first consultation in the outpatient clinic with the main complaint of musculoskeletal pain were asked to participate in the study. When they gave informed consent they were randomized either to the SDM group or to the information group. After confirmation of the diagnosis they were included in the study.

Results

All three patient groups were comparable as to socio-economic (see Table 1) and health related variables (see Table 3) except for lower depression scores in the comparison group (t = −2.12, p < 0.05) at baseline.

Discussion

The quantitative and qualitative results of this study concordantly corroborate our main hypothesis that treatment in accordance with SDM principles ameliorates the physician–patient relationship for FMS patients and doctors equally. The aspect of providing information [31] was also very helpful for the quality of interaction. But to achieve best results concerning physician–patient interaction, an SDM communication training was necessary. One aspect of the high overall satisfaction in both

Acknowledgements

We would like to thank all participating patients and clinicians. This study has been supported by a grant of the German Federal Ministry of Health in the context of a large research focus on “Patients as Partners in the Medical Decision-Making Process.”

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