A patient and physician survey of fibromyalgia across Latin America and Europe

Fibromyalgia (FM) is a multi-factorial disease involving physiological as well as psychological factors, and characterized by widespread pain and muscle tenderness accompanied by other comorbid symptoms [1, 2]. Prevalence estimates vary, with up to 5% of women reported to have FM from survey data in the US and across Europe [2‐4], but some lower estimates have been presented from survey data of rheumatic diseases for other regions, such as certain Latin American countries [5‐9]. Although the reasons for differences in prevalence are ultimately unknown, differences among healthcare practices, historical recognition of FM symptoms, and dissemination of guidelines on diagnosis in different regions of the world could be factors. In addition, referral bias, whereby hospital-based data produce higher estimates of disease prevalence than survey samples from the general population, also contributes to variation in the literature.

Guidelines for diagnosis and/or management of FM have been published by recognized bodies, such as the American College of Rheumatology (ACR) [1, 10], and by bodies outside of the US [11‐13]. Despite these protocols, FM is under-diagnosed and under-treated [14]. Physicians may diagnose patients by ruling out other conditions that share some symptoms with FM, for example chronic fatigue syndrome, rheumatoid arthritis, and multiple sclerosis [15]. Local treatment practices and diagnosis guidelines especially outside of the US and the ACR may not be widely disseminated to physicians who encounter patients with FM symptoms in their everyday practice. As a result, diagnosis and treatment can be delayed and efforts to improve recognition and diagnosis are needed [14]. For some patients, satisfaction with health status increases with a diagnosis [16], and therefore earlier diagnosis and treatment may improve treatment response and reduce the negative impact that FM symptoms have on aspects of daily living [17‐20]. FM patients in some countries report frequent healthcare use and work days lost compared with both non-FM subjects and patients with other rheumatic conditions [17, 21‐23]. As a result of high healthcare use, studies from the US and Europe have found that FM places a significant economic burden on patients and healthcare systems [24‐26]. Hidden costs of disability and comorbidities associated with FM likely increase the true burden of FM even higher.

Despite the well-reported burden FM has on activities of daily living, few data on the social and personal impact of FM on patients from Latin American countries have been published, and no data, to our knowledge, have been published examining patient and physician data from Latin America in comparison with other countries that use different healthcare practices. This international survey of FM patients and physicians from three Latin American countries and six European countries sought to examine differences in the perception and management of FM, and social and occupational aspects of FM between countries with different cultures and economies: Latin America and Europe.

Data were collected between February-April 2008 in Europe, and October-December 2010 in Latin America. Surveyed physicians including primary care practitioners (PCPs) and specialists were identified using proprietary physician databases developed and maintained by research agencies in each of the countries, lists of professional physician associations, phone directories, and other commercially available sample sources. “Physicians who treated FM patients” or “FM-treating physicians” were defined for this survey as physicians currently seeing or who had seen at least one FM patient over the past 2 years. Patients had to have been diagnosed with FM by a physician and they were identified by physicians who treated them for FM. The recruiting physicians either participated in the survey or were sampled specifically to recruit FM patients, but did not complete the physician survey. Except for patients from Brazil, patients and physicians were compensated for completing the survey. Ethical approval for this study was not required according to regulations within the countries, at the time the surveys were carried out.

A wealth of data exists on the burden of FM from individual countries, particularly from the United States. However data from within the Latin American region and healthcare setting is particularly sparse [27] and no study has described the Latin American perspective of FM alongside patients from a different region. This study describes how FM is perceived and managed across different healthcare settings using two regions with different cultures and economies: Latin America and Europe. Consistent with reports from other countries [17, 22, 28], FM is reported by patients and physicians to be a debilitating chronic/widespread pain condition, more common in women, and which is characterized by multiple symptoms that negatively impact daily living. The negative impact FM had on patients and the disruption symptoms caused to aspects of daily living are also broadly in line with survey data from other regions [17, 19, 20, 22], and reinforce the high burden FM imparts on patients, regardless of region of origin. Given the range of the data surveyed, some divergence would be expected. Nevertheless, our study presents many new observations in these populations, in addition to highlighting important differences, particularly between the impact and disruption caused by FM from a physician and patient viewpoint, within the same region. Our data therefore highlight some misalignment in perceptions of FM that need to be addressed and warrant further investigation.

Our analysis extends individual reports from within Latin America or Europe [5, 7, 19, 29] to describe differences between patient and physician experiences regarding how FM is diagnosed, perceived, and managed. For example, patients from Latin America reported having FM symptoms for significantly longer time, and taking significantly longer to be diagnosed, and seeing more physicians to receive a diagnosis compared with European patients. Studies from the United States indicate that patients often go 5 years before receiving a correct diagnosis of FM [14, 17, 30], suggesting that despite the differences in journey to diagnosis patients from both regions herein were diagnosed relatively quickly (LA: 3.5 years; Europe: 2.5 years). The time difference seen between regions is representative of the work-up patients with FM face when a diagnosis is unclear, particularly historically when FM was less well defined and understood. For example, pain or other symptoms (eg., fatigue, sleep problems, depression, etc.) may have been treated by physicians as separate conditions, or even disregarded if they considered there to be a lack of medical evidence for the pain [31]. These and similar issues are inherent variables some patients face prior to receiving a confirmed diagnosis of FM [14]. Physicians, both PCPs and specialists, were generally aware of the ACR 1990 diagnosis guidelines; however they were more widely known and adopted in Latin America vs. European practices. This could be representative of European practices adopting European diagnosis or management practices that are more locally disseminated to PCPs and specialists [32]. Evidence suggests that receiving an accurate diagnosis is the first step to effective care and better outcomes for patients [14]. As such, differences in time to diagnosis in Latin America compared with Europe may have influenced disease characteristics. For example, a higher proportion of patients from Latin America reported common symptoms, and reported symptoms as being disruptive, than their European counterparts. Other factors influencing journey to diagnosis and FM experience between regions should also be considered, including patients being considered in different countries the responsibility of primary care vs. rheumatology or other specialist, which will in turn influence treatment practices as discussed in detail below.

Data were collected across different countries and healthcare systems that have different treatment practices and cultures and some of the differences observed in the FM experience may be reflective of these cultures and practices. For example, although some data have reported that clinical characteristics and patient perceptions are broadly similar across different regions [17, 33, 34], important ethnic, racial, and sociocultural differences between populations in pain perception have been noted [35‐38]. Given the ethnic diversity of populations surveyed, these factors may well have influenced responses provided, and account for some of the differences in disease experiences recorded, although the magnitude of these influences remains unknown. Zborowski and Zola published pioneering work investigating ethnic and cultural differences in the experience of pain, including attitudes and behavioral aspects that are generated after pain, the differences in impact of the disease, and what patients from different ethnic backgrounds do in order to find help or a cure for their pain [39, 40]. Since this early work, numerous authors have published cultural differences regarding stoicism, expression, beliefs, and attitudes with regard to pain and pain perception. The ways in which patients and healthcare providers interact is also influenced by ethnicity, particularly when a painful condition is present [41], and in certain ethnic groups pain is reportedly undertreated [42]. For many questions in the present study, patients from Latin America rated responses significantly higher than in Europe, which may be representative of the more “expressive” nature of patients from Latin American and the more stoic European population [41]. How these differences in journey to diagnosis and expression of FM may ultimately impact FM prevalence, which is generally lower in Latin American countries compared with Europe [3, 5, 9, 29, 43], would need further study. As such, the generalizability of the data to other countries or other FM patient populations cannot be assumed.

Patients from both regions reported using pharmacological and non-pharmacological approaches to manage their FM symptoms, and differences noted between regions provide some important insights into healthcare practices between Europe and Latin America. For example, aerobic exercise is helpful for some FM patients [44, 45] and it is somewhat surprising that less than 50% of patients reported exercise therapy in either region. This may suggest that when appropriate, physicians should encourage their patients to participate in some form of exercise. An interesting area of further study in these regions would be to categorize the type and/or schedule of exercise, e.g., giving subtypes of exercise (gentle, aerobic, walking, etc.) may change the proportion of patients responding. For example, a study comparing FM management in Germany vs. the US reported that “aerobic exercise” was used by 32% of the US consumers compared with 58% German consumers; however gentle exercise was much higher (64% vs 80%) [46]. Other non-pharmacological treatment options, such as relaxation techniques, biofeedback, and lifestyle changes, were more commonly used in Europe. Given differences in economy for some Latin American vs. European countries, these treatments may not be easily accessible and/or reimbursed, and their utility and effectiveness is therefore harder to demonstrate in Latin America. From a pharmacological perspective, FM was managed by multiple medications, albeit fewer in Latin America than in Europe, which as noted above, may have influenced number and negative impact of FM symptoms in Latin America vs. Europe. Physician treatment practices have been shown to vary depending on ethnicity [42, 47]. These inherent variables may have influenced prescribing practices in Latin America vs. Europe, especially considering fewer symptoms were experienced by patients in Europe. OTC medications were used by up to 70% of patients in both regions, highlighting that patients may have been self-managing their symptoms, in addition to, or instead of their prescriptions. Although the specific OTC therapies used were not captured and will have varied among countries surveyed even within-region, over half of all patients reported out-of-pocket costs in both regions, albeit significantly more in patients from Latin America than Europe. Although not quantified by actual costs, the wider economic impact of FM was most notable in Latin America, with almost half of employed patients missing more than 40 days’ work in the past year. Efforts should be made to help keep patients working, as long-time sick leave has been found detrimental to long-term recovery [48, 49]. As a result, energy conservation, occupational therapy, evaluation, and work adaptation are important aspects of FM management [49, 50] and our survey suggests in particular that physicians in Latin America should be made aware and help keep patients in work.

We report that many different types of physicians are seeing FM patients in these two healthcare settings, probably due to the diverse range of symptoms that are involved in the condition. Our study highlights that in Europe more patients were seen in primary care by a general practitioner, compared with 32% seen by internists for primary care in Latin America. A range of specialists were seeing FM patients in both regions. The ability to conduct an efficient and accurate assessment and diagnosis will depend on the physician’s background knowledge and training [51, 52], and the differences in training experiences between countries may have influenced patients’ journey to diagnosis, as discussed previously. For example, ACR diagnosis criteria are used in many countries outside of the United States, including most often in Latin American countries and across some parts of Europe. Regional knowledge of diagnosis guidelines will vary, however. Recent advances in the understanding of the pathophysiology of FM may not have extended to non-specialists in primary care, and may also have differed between regions as indicated by the differences in knowledge and adoption of the ACR criteria, for example. In addition, updated ACR diagnosis criteria [1] and other guidelines outside of the US [12, 32] reflect that generalized pain does not adequately characterize FM and a broader assessment of pain, function, and psychosocial aspects may aid in FM diagnosis and, ultimately, management. These observations are supported by the symptoms experienced by patients from both regions in the present survey. Updated diagnosis guidelines were released by ACR in May 2010, just prior to the Latin American survey. As a result, these updated guidelines may have increased general awareness of FM. Indeed, although pain was the principal symptom in both regions, Latin American physicians more often considered a wider range of typical FM symptoms as “Very” or “Extremely” disruptive to their patients than their European counterparts, many of which are consistent with the updated ACR diagnosis guidelines. With growing acceptance and understanding of FM, there seems a need to include focused education for physicians regarding FM, starting ideally at medical school, to ensure all types of physician have a basic understanding of the condition when encountered. It is also paramount there is a better understanding, particularly in non-specialists, of mechanisms of chronic vs. acute pain in order to fully understand the physiology of FM and other chronic pain conditions. This is particularly important given the different approaches to management required for pain of different origins, in addition to effective management of comorbidities and the multi-factorial symptoms of FM [53]. Enhancing educational initiatives in both countries may help improve recognition, diagnosis, and patient satisfaction with management in the longer term [54‐56]. We also suggest that further efforts to implement structured treatment paradigms, incorporating pharmacological and non-pharmacological approaches for FM, may likewise guide physicians and improve confidence in treatment choices most appropriate for FM.

It is well known that a range of physicians encounter patients with FM; however, few studies have commented on how patients and physicians perceive FM differently and furthermore how this is influenced by physician type. Overall, FM symptoms were reported by patients and physicians from both regions to be “Very” or “Extremely” disruptive, and having a negative impact on many aspects of daily living. More physicians (PCPs or specialists) from Latin America considered recognized somatic symptoms of FM (per [1, 10]), such as problems sleeping, difficulty concentrating, depression, and numbness/tingling, as disruptive (Very/Extremely) than their European counterparts. Nevertheless, more Latin American patients rated FM symptoms as disruptive than their physicians. This suggests that although physicians in Latin America are more aware of the disruption caused by common FM symptoms than their European counterparts, their perceptions still fall short of patients from the same region. Despite these differences in opinions on disruption of FM symptoms, interestingly within Latin America, more physicians (PCPs or specialists) rated that FM had a “Very strong” or “Strong” impact on mood, sex life, and personal relationships than patients themselves, and furthermore matched patient’s responses to all other aspects of daily living. Within Europe, more specialists likewise rated that FM had a very strong or strong impact on some aspects of daily living than European patients themselves, although responses from patients and PCPs in Europe were generally better aligned. Our observations suggest effort is needed to align patient’s and physician’s perception of FM within these regions. For example, quality of life questionnaires alongside educational initiatives could help draw attention to which FM symptoms are most disruptive and important to the patient. These types of questionnaires are not widely used in private practice, despite being translated into different languages [57‐60]. Collectively, our observations indicate that there is still a long way to go concerning optimizing management of FM, irrespective of ethnic background and prescribing practices.

Our study should be interpreted in light of some limitations. The World Health Organization (WHO) recognized and classified fibromyalgia in 1993, yet in some countries doctors will have been unfamiliar with the condition, diagnosis criteria and/or treatment practices. In some countries included in our survey, no treatments are specifically approved for the treatment of FM and therefore management of patients both with prescription products and off label where no products are specifically available may have differed, particularly to countries where clear treatment protocols for FM are accepted and recommended. We sought to ensure that the diagnosis of FM was not entirely dependent on the patient’s recollection, by only including patients who were diagnosed with FM by a physician according to standard criteria [10]. FM is a clinical diagnosis and previous research suggests physicians express difficulties in diagnosis and managing FM, and confidence varied depending on specialty [51]. Therefore whether or not physicians were board-certified, and also if physicians had experience of FM sufficient to make a differential diagnosis, are inherent variables for some of the questions posed in the survey. We therefore ensured that medical evidence was available for FM being present, to limit the possibility of physicians disregarding the pain condition due to lack of medical evidence [31]. An important limitation of all opinion research, to which this study is not an exception, is that respondents may not perfectly recall their experiences and feelings at the time of the survey, as respondents' feelings, attitudes, and perceptions are subject to change with time. The survey only provides a snapshot of the respondents' experiences and does not seek to address how these might have changed longitudinally. Therefore, the observations should be considered within the time-frame they were captured, which differed slightly between regions as noted above. Although the numbers of respondents per country were the same, data were collected from more European countries than Latin American countries, increasing the diversity of responders within the European dataset. Despite these limitations, our study provides new insights into the perceptions and management of FM patients in countries outside of the US, and identified some potential areas for targeted improvement.

Differences between FM characteristics, treatment practices, and opinions were noted by physicians and patients from Latin America and Europe and interestingly patient- and physician-rated disease impact and perception was often higher in Latin America than in Europe. Improved understanding of these complexities involved in FM in different healthcare settings may help target educational/training programs towards improving aspects of chronic care. As patient’s and physician’s perspectives concerning FM impact and disruption were often misaligned within the same region, there is a clear need to focus on understanding and ultimately improving these conflicting views in order to optimize chronic care.

PC is head of the Clinical Epidemiology Unit, and the Hospital Infantil Federico Gómez-faculty of Medicne UNAM; and an International Fellow at the American College of Rheumatology. ESP is an Assistant Professor at the Universidade Federal do Parana, Curitiba, Brazil; Chief, Fibromyalgia Clinic, Universidade Federal do Parana, Curitiba, Brazil; and an International Fellow at the American College of Rheumatology.