Managing chronic illnesses is a challenge for health care systems and the professionals caring for these patients (1
). Chronic illnesses are characterized by certain conditions that are difficult to control and needs that vary from one patient to another, thus making diagnosis, treatment and the doctor-patient relationship difficult (3
). Fibromyalgia is a chronic disease that affects approximately 5% of the general population, mainly women (9
). The main symptom is generalized musculoskeletal pain associated with fatigue, sleep disorders, morning stiffness and depression (12
The nonspecific symptomatology of fibromyalgia, together with the absence of radiological, analytical and anatomo-pathological findings, makes management of the disease difficult. In addition, treatment is provided according to the symptoms experienced by the patient and is not standardized (15
). Disease management is a system of coordinated health care interventions aimed at improving patient care and quality of life, as well as supporting the professional-patient relationship (18
). The right diagnostic approach leads to greater therapeutic success, and both depend to a great extent on a good health professional-patient relationship (20
Diagnosis of fibromyalgia usually has a positive impact on patients, mainly because it means the disease becomes legitimized (22
). Thus, giving the disease a diagnostic label helps the patient to cope and lessens stigmatization (25
). Nevertheless, some authors claim that being diagnosed with fibromyalgia may have a negative effect on the patient’s identity and self-esteem (26
). What is clear, however, is that patients describe their search for a diagnosis, which usually involves long delays and numerous consultations with a variety of specialists, as frustrating and unsatisfactory (23
Studies also describe feelings of dissatisfaction with the drugs prescribed because patients notice very little improvement in their symptoms (28
). Some recent studies report that one of the options patients most highly value are nonpharmacological treatments; however, these also have some drawbacks because they are usually very expensive, it is necessary to persevere with treatment and the benefits are only apparent in the long term (27
The relationships between fibromyalgia patients and health professionals tend to be difficult (25
). Patients described being understood by the professionals caring for them as a necessity (31
). However, they frequently complained of a lack of understanding and support among professionals (26
). Furthermore, when there is no agreement on the diagnosis, causes or treatment, patients may become so frustrated that they do not even complete the therapy prescribed (34
). There are very few studies investigating the different aspects of fibromyalgia management from a health professional’s perspective (35
). Those that do exist describe the uncertainty that professionals experience when dealing with this disease due to the lack of knowledge concerning its etiology and treatment. In these studies, professionals describe their encounters with patients as problematic because they often feel that their professionalism and explanations are questioned by the latter. Even so, they recognize that taking an interest in patients, showing empathy and communicating with them is beneficial.
To date, the opinions of professionals and patients concerning the care provided for fibromyalgia have only been compared by collecting information from discussion groups, which included patients with other chronic pathologies (2
). These fibromyalgia patients considered the care provided by doctors and health care services to be deficient, especially with regard to integrated, humane, respectful care, clear relevant information and continuity in the follow-up. In turn, doctors considered that a great deal of the effort they put into caring for these patients was wasted and believed it was important to reconsider their clinical obligations and relationship with the patients.
To date, studies on fibromyalgia have mainly focused on the diagnostic approach and therapeutic management or on the health professional-patient relationship (15
). However, these three aspects have not been analyzed together in the scientific literature. Moreover, the views of fibromyalgia patients and health professionals responsible for their care concerning management of this disease are not known. Therefore, the present study aimed to explore the three aspects of the clinical management of fibromyalgia (diagnostic approach, therapeutic management and health professional-patient relationship) from two different points of view – that of the professionals and that of the patients – to identify specific areas of the health care process that are deficient or unsatisfactory.