Fibromyalgia position paper

Fibromyalgia syndrome is one of the most common causes of chronic widespread pain, but pain accompanies a wide range of ancillary symptoms. To date, its aetiopathogenesis remains elusive, and diagnosis is exquisitely clinical, due to the lack of biomarkers or specific laboratory alterations in fibromyalgia patients. This position paper has the purpose to summarise the current scientific knowledge and expert opinions about the main controversies regarding fibromyalgia syndrome, namely: (i) fibromyalgia definition and why it is still not recognised in many countries as a distinct clinical entity; (ii) fibromyalgia severity and how to evaluate treatment outcome; (iii) how to treat fibromyalgia and which is a correct approach to fibromyalgia patients

Diagnostic and therapeutic care pathway for fibromyalgia

Early diagnosis and timely and appropriate treatments positively influence the history of fibromyalgia syndrome (FM), with favourable repercussions at clinical, psychological, social and economic levels. Notwithstanding, there are still significant problems with timeliness of diagnosis, access to pharmacological therapies - particularly to innovative ones - and appropriate and effective taking in charge of patients. All the aforementioned factors have a great impact on FM patients' quality of life. Indeed, even though the World Health Organisation recognised FM as a chronic condition in the International Classification of Diseases 10th edition (ICD-10), many countries still fail to recognise the syndrome, and this negatively influences the capability to appropriately protect and care for patients. This is the case in several European Countries. In Italy, a few Regions have started to put in place precise indications for people suffering from FM, aiming at the implementation of diagnostic-therapeutic pathways. The Diagnostic-Therapeutic Care Pathway (DTCP) provides an important tool to meet the needs of patients suffering from chronic diseases. They present the organisation of an integrated assistance network. This includes a seamless path for disease prevention, diagnosis and treatment, by means of cooperation among physicians and other healthcare professionals

Quality of Life of Celiac Patients in Brazil: Questionnaire Translation, Cultural Adaptation and Validation

(1) Background: Celiac disease (CD) is a common autoimmune disorder. The manifestations of the disease and the obligatory life-long gluten-free diet (GFD) are associated with the impairment of patients’ quality of life. Therefore, the present study aimed to translate, culturally adapt and validate a celiac disease quality of life (CD-QoL) questionnaire and apply it to a representative number of Brazilian CD patients. (2) Methods: A cross-cultural Brazilian-Portuguese version of the CD-QoL was developed according to revised international guidelines. The questionnaire was administered to 450 celiac patients. The reliability, reproducibility and validity were studied. (3) Results: The Brazilian CD-QoL questionnaire presents valid measures of reproducibility and internal consistency. Early diagnosis is related to higher scores of Brazilian CD-QoL social, sub- and total scale. There was a positive correlation between higher education level and higher QoL. Individuals with partners tend to have a better emotional subscale of QoL. CD-patients who follow a strict GFD have highest QoL scale values. Men scored higher than women on the CD-QoL. All results were statistically significant except for the gastrointestinal subscale. (4) Conclusions: Brazilian CD-QoL allows comparative research between different celiac populations in the world. QoL research will help in the development of effective strategies to improve Brazilian celiac patients’ quality of life

Evaluation of Quality of Life of Adult Patients with Celiac Disease in Argentina: From Questionnaire Validation to Assessment

This cross-sectional study aimed to translate, culturally adapt, validate, and apply a Celiac Disease Quality of Life (CD-QoL) questionnaire to a representative sample of Argentina’s celiac population. A previously developed and validated questionnaire (Celiac Disease Questionnaire: CDQ) was chosen as a tool for assessing the health-related quality of Life (HRQoL) of adult celiac patients in Argentina. Therefore, the study was performed in four stages: (a) translation and re-translation of the CDQ to Argentinian-Spanish language; (b) cultural adaptation and semantic evaluation; based on the Delphi method (c) validation of the CDQ by applying it to a representative sample of Argentinian celiac patients; (d) statistical analysis of the data. The result of stages (a) and (b) was a translated and culturally adapted an Argentinian-Spanish version of the CDQ, which was generated after reaching consensus between the corresponding four (phase a) and 10 (phase b) professionals involved in the different phases of this process. Among them, we can cite bilingual healthcare professionals with extensive experience in research and celiac disease, celiac patients, gastroenterologists, general practitioners, dieticians, and psychologists. The resulting CDQ proved to be an appropriate measuring tool to assess the HRQoL of Argentinian celiac patients confirmed by a good fit in the confirmatory factor validity analysis (RMSEA < 0.001 and χ2 = 267.325, df = 313, p = 0.971) and high values of internal consistency (Cronbach’s alpha > 0.7). A total of 191 participants accessed the questionnaire, and 171 individuals from 20 out of 23 Argentinian states completed the questionnaire. There was no correlation between higher educational level nor marital status with QoL. Individuals on a strict gluten-free diet (GFD) and those who do not take antidepressants showed higher QoL. Male gender also presented better HRQoL. There was no correlation between differences in HRQoL and age of the respondent, age at diagnosis, symptoms at diagnosis, or having other chronic diseases. However, a significantly higher score of HRQoL was reported among those individuals who disclosed having knowledge of CD related national regulations and benefits. This study highlights the importance of maintaining current public health regulations that support chronic disease patients, such as celiac patients

Fibromyalgia position paper

none27siFibromyalgia syndrome is one of the most common causes of chronic widespread pain, but pain accompanies a wide range of ancillary symptoms. To date, its aetiopathogenesis remains elusive, and diagnosis is exquisitely clinical, due to the lack of biomarkers or specific laboratory alterations in fibromyalgia patients. This position paper has the purpose to summarise the current scientific knowledge and expert opinions about the main controversies regarding fibromyalgia syndrome, namely: (i) fibromyalgia definition and why it is still not recognised in many countries as a distinct clinical entity; (ii) fibromyalgia severity and how to evaluate treatment outcome; (iii) how to treat fibromyalgia and which is a correct approach to fibromyalgia patients.noneSarzi-Puttini, Piercarlo; Giorgi, Valeria; Atzeni, Fabiola; Gorla, Roberto; Kosek, Eva; Choy, Ernest H; Bazzichi, Laura; Hauser, Winfred; Ablin, Jacob N; Aloush, Valerie; Buskila, Dan; Amital, Howard; Da Silva, Jose A P; Perrot, Serge; Morlion, Bart; Polati, Enrico; Schweiger, Vittorio; Coaccioli, Stefano; Varrassi, Giustino; Di Franco, Manuela; Torta, Riccardo; Øien Forseth, Karin Maria; Mannerkorpi, Kaisa; Salaffi, Fausto; Di Carlo, Marco; Cassisi, Gianniantonio; Batticciotto, AlbertoSarzi-Puttini, Piercarlo; Giorgi, Valeria; Atzeni, Fabiola; Gorla, Roberto; Kosek, Eva; Choy, Ernest H; Bazzichi, Laura; Hauser, Winfred; Ablin, Jacob N; Aloush, Valerie; Buskila, Dan; Amital, Howard; Da Silva, Jose A P; Perrot, Serge; Morlion, Bart; Polati, Enrico; Schweiger, Vittorio; Coaccioli, Stefano; Varrassi, Giustino; Di Franco, Manuela; Torta, Riccardo; Øien Forseth, Karin Maria; Mannerkorpi, Kaisa; Salaffi, Fausto; Di Carlo, Marco; Cassisi, Gianniantonio; Batticciotto, Albert

Diagnostic and therapeutic care pathway for fibromyalgia

Early diagnosis and timely and appropriate treatments positively influence the history of fibromyalgia syndrome (FM), with favourable repercussions at clinical, psychological, social and economic levels. Notwithstanding, there are still significant problems with timeliness of diagnosis, access to pharmacological therapies - particularly to innovative ones - and appropriate and effective taking in charge of patients. All the aforementioned factors have a great impact on FM patients' quality of life. Indeed, even though the World Health Organisation recognised FM as a chronic condition in the International Classification of Diseases 10th edition (ICD-10), many countries still fail to recognise the syndrome, and this negatively influences the capability to appropriately protect and care for patients. This is the case in several European Countries. In Italy, a few Regions have started to put in place precise indications for people suffering from FM, aiming at the implementation of diagnostic-therapeutic pathways. The Diagnostic-Therapeutic Care Pathway (DTCP) provides an important tool to meet the needs of patients suffering from chronic diseases. They present the organisation of an integrated assistance network. This includes a seamless path for disease prevention, diagnosis and treatment, by means of cooperation among physicians and other healthcare professionals