Dataset Information

A patient survey of the impact of fibromyalgia and the journey to diagnosis.

ABSTRACT: BACKGROUND: Fibromyalgia is a painful, debilitating illness with a prevalence of 0.5-5.0% that affects women more than men. It has been shown that the diagnosis of fibromyalgia is associated with improved patient satisfaction and reduced healthcare utilization. This survey examined the patient journey to having their condition diagnosed and studied the impact of the condition on their life. METHODS: A questionnaire survey of 800 patients with fibromyalgia and 1622 physicians in 6 European countries, Mexico and South Korea. Patients were recruited via their physician. RESULTS: Over half the patients (61%) were aged 36-59 years, 84% were women, and the mean time since experiencing fibromyalgia symptoms was 6.5 years. Patients had experienced multiple fibromyalgia symptoms (mean of 7.3 out of 14), with pain, fatigue, sleeping problems and concentration difficulties being the most commonly reported. Most patients rated their chronic widespread pain as moderate or severe and fibromyalgia symptoms were on average "fairly" to "very" disruptive, and had a "moderate" to "strong" impact on patients' lives. 22% were unable to work and 25% were not able to work all the time because of their fibromyalgia. Patients waited on average almost a year after experiencing symptoms before presenting to a physician, and it took an average of 2.3 years and presenting to 3.7 different physicians before receiving a diagnosis of fibromyalgia. Patients rated receiving a diagnosis as somewhat difficult on average and had difficulties communicating their symptoms to the physician. Over one third (35%) felt their chronic widespread pain was not well managed by their current treatment. CONCLUSIONS: This survey provides further evidence that fibromyalgia is characterized by multiple symptoms and has a notable impact on quality of life and function. The diagnosis of fibromyalgia is delayed. Patients wait a significant period of time before presenting to a physician, adding to the prolonged time to diagnosis. Patients typically present with a multitude of symptoms, all resulting in a delay in diagnosis and eventual management. Helping clinicians to diagnose and manage patients with fibromyalgia should benefit both patients and funders of healthcare.

SUBMITTER: Choy E

PROVIDER: S-EPMC2874550 | biostudies-literature | 2010

REPOSITORIES: biostudies-literature

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A patient survey of the impact of fibromyalgia and the journey to diagnosis.

Choy Ernest E Perrot Serge S Leon Teresa T Kaplan Joan J Petersel Danielle D Ginovker Anna A Kramer Erich E

BMC health services research 20100426

<h4>Background</h4>Fibromyalgia is a painful, debilitating illness with a prevalence of 0.5-5.0% that affects women more than men. It has been shown that the diagnosis of fibromyalgia is associated with improved patient satisfaction and reduced healthcare utilization. This survey examined the patient journey to having their condition diagnosed and studied the impact of the condition on their life.<h4>Methods</h4>A questionnaire survey of 800 patients with fibromyalgia and 1622 physicians in 6 Eu ...[more]

PMID: 20420681

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Project description:BackgroundLimited data are available on the experiences of patients with autoinflammatory diseases (AIDs) and their families along the path to diagnosis and treatment. We sought to describe these experiences in patients with AIDs including tumor necrosis factor receptor-associated periodic syndrome (TRAPS), mevalonate kinase deficiency/hyperimmunoglobulin D syndrome (MKD/HIDS), and familial Mediterranean fever (FMF).MethodsNinety-minute, semi-structured qualitative interviews and 5-day written/video diaries were used to gather information on the experiences of patients with AIDs and their families.ResultsTwelve families of patients from the US (TRAPS [n = 4], MKD/HIDS [n = 5], FMF [n = 5]) participated in this study from August to November 2015. The study included two families with multiple afflicted siblings. Patients' ages ranged from 1 to 28 years. Most parents reported realizing that something was seriously wrong with their child after medical emergencies and/or hospitalizations, which initiated the difficult path to diagnosis. For most, the process included multiple specialist visits, extensive and repeated testing, and many misdiagnoses. Over time, 92% of parents reported losing confidence in the healthcare system's ability to find an answer to their child's symptoms, while they also struggled with unsupportive school personnel and dismissive friends and relatives. Patients and their parents reported holding on to memories of "what life was like" before the onset of symptoms and mourning their subsequent loss of "normalcy." Even after diagnosis, patients and parents continued to feel uncertain about what to expect in the future.ConclusionsAll families emphasized the need for efficient early diagnosis of AIDs. Initiatives that improve the speed and accuracy of diagnosis, provide more comprehensive patient education, and support patients and families through the illness have the potential to significantly improve the quality of life of patients with AIDs and their families. Healthcare providers should be aware of the impact of the long diagnostic journey on families and work to create an environment of trust and collaboration in the face of a difficult and prolonged diagnostic process.

Project description:BACKGROUND: Patients and physicians from three Latin American (LA) and six European countries were surveyed in order to describe differences in journey to diagnosis, impact, and management of fibromyalgia (FM). METHODS: 900 patients (300 LA; 600 Europe) and 1824 physicians (604 LA; 1220 Europe) were surveyed between October-December 2010 (LA) and February-April 2008 (Europe). Patients and physicians (GP or specialists) completed separate questionnaires, on symptoms, impact, and FM management. Interviews were conducted in local languages. Appropriate rating scales were used throughout. Data were analyzed using cross-tabulations and descriptive statistics. Significance was determined at P<0.05 (indicated by *). RESULTS: In LA versus Europe, patients reported having FM symptoms for longer (100.8 vs. 83.7* months), and taking longer to be diagnosed (42.3 vs. 31.1* months). FM was characterized by multiple symptoms (11.2 vs. 6.9), but more LA patients reported 14 common symptoms*, and rated pain higher on 11-point scale (8.0 vs. 7.2*). LA patients were taking fewer medications (3.3 vs. 4.0). Patients from both regions found common symptoms very/extremely disruptive to their quality of life, but symptoms impacted daily living and ability to work more significantly in LA. Physicians (GPs or specialists) from LA more often considered problems sleeping*, difficulty concentrating*, anxiety*, depression*, numbness/tingling*, and leg cramps* very/extremely disruptive vs. European physicians. Despite headache, heightened sensitivity to touch, difficulty concentrating, and joint pain being experienced by ?50% of patients from both regions, <15% of PCPs or specialists considered these typical FM symptoms. Patients also considered 12/14 symptoms more disruptive than PCPs or specialists in the same region. However, a higher proportion of PCPs or specialists considered FM to have a strong/very strong impact on aspects of daily living vs. patients within the same region. CONCLUSIONS: Patient- and physician-rated disease perception and impact was often higher in LA than in Europe. Patient and physician perspective concerning FM impact and disruption were often misaligned within the same region. Our observations may be representative of cultural differences in stoicism, expression, beliefs, and attitudes to pain perception and management. Better understanding of these complexities could help targeted educational/training programs incorporating cultural differences, to improve chronic care.

Project description:BACKGROUND: Fibromyalgia (FM) is a condition characterized by widespread pain and is estimated to affect 0.5-5% of the general population. Historically, it has been classified as a rheumatologic disorder, but patients consult physicians from a variety of specialties in seeking diagnosis and ultimately treatment. Patients report considerable delay in receiving a diagnosis after initial presentation, suggesting diagnosis and management of FM might be a challenge to physicians. METHODS: A questionnaire survey of 1622 physicians in six European countries, Mexico and South Korea was conducted. Specialties surveyed included primary care physicians (PCPs; n=809) and equal numbers of rheumatologists, neurologists, psychiatrists and pain specialists. RESULTS: The sample included experienced doctors, with an expected clinical caseload for their specialty. Most (>80%) had seen a patient with FM in the last 2 years. Overall, 53% of physicians reported difficulty with diagnosing FM, 54% reported their training in FM was inadequate, and 32% considered themselves not knowledgeable about FM. Awareness of American College of Rheumatology classification criteria ranged from 32% for psychiatrists to 83% for rheumatologists. Sixty-four percent agreed patients found it difficult to communicate FM symptoms, and 79% said they needed to spend more time to identify FM. Thirty-eight percent were not confident in recognizing the symptoms of FM, and 48% were not confident in differentiating FM from conditions with similar symptoms. Thirty-seven percent were not confident developing an FM treatment plan, and 37% were not confident managing FM patients long-term. In general, rheumatologists reported least difficulties/greatest confidence, and PCPs and psychiatrists reported greatest difficulties/least confidence. CONCLUSIONS: Diagnosis and managing FM is challenging for physicians, especially PCPs and psychiatrists, but other specialties, including rheumatologists, also express difficulties. Improved training in FM and initiatives to improve patient-doctor communication are needed and may help the management of this condition.

Dataset Information

A patient survey of the impact of fibromyalgia and the journey to diagnosis.

Publications

A patient survey of the impact of fibromyalgia and the journey to diagnosis.

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