OP0320-PARE FIBROMYALGIA NETWORK – A MULTIDIMENSIONAL PROJECT FOR PEOPLE WITH FIBROMYALGIA SYNDROME
Authors: A. Celano, S. Mingolla, I. Cinieri, A. Marsico
Journal: Annals of the Rheumatic Diseases (2020)

Background: Fibromyalgia Syndrome (FMS) is a clinical non-joint syndrome characterized by diffuse, prolonged, and unexplained muscle pains. The health effects of FMS are pervasive and wide ranging. It is frequently associated with depression, anxiety and post-traumatic stress disorder. Patients describe living with daily unrelenting chronic widespread pain, persistent chronic fatigue, sleep issues, and cognitive effects. Fibromyalgia impacts all aspects of patients’ lives. Patients report severe limitations in maintaining relationships, performing at work or school, and caring for self and family. They experience stigma within society, social isolation, healthcare and financial challenges of treatment, and fears of living with an often misunderstood condition. In 2019 APMARR launched Fibromyalgia Network a project that aimed at improving the quality of life of patients with FMS. Objectives: Experiment a set of good practices at territorial level to be expanded nationally to improve the FMS patients’ conditions Create a multisectoral, patient-oriented network with different stakeholders Launch a communication campaign to inform and change the perception of the pathology Train the General Practitioners in order to increase early diagnosis Empower the Patients Promote innovative treatments and the data acquisition about hyperbaric oxygen therapy Provide free psychological and information support Methods: The project was based on the assumption supported by evidence that a multi-modal treatment approach improves the quality of life of person with FMS including a combination of drug and non-drug treatments and a range of health care specialties. All the activities implemented were shaped on a holistic approach to treating Fibromyalgia, including lifestyle management, diet and exercise, and psychosocial techniques, in addition to medical treatments. Results: 1) A territorial network coordinated by APMARR was created involving Puglia Region, Health Authorities, Professional board of Psychologists, National Association of People with FMS, Professional board of Physicians, Italian Society Of Rheumatology-Puglia 2) A communication campaign was widely spread among social network, a brochure was written in collaboration with the Italian Society of Rheumatology and distributed to the general public, a national level conference was organized in Bari 3) A training program acknowledged by the Italian Health Minister Program involved more than 120 GPs 4) A patients expert program involved more than 100 patients 5) A group of patients were tutored in their treatment with hyperbaric oxygen therapy and a report was sent to the HTA Italian Program in collaboration with the Puglia Region HTA Center. It was the first HTA report elaborated in collaboration with a patient organization in Italy 6) Self-mutual help groups were organized with free psychological support, as well as an information desk and a toll-free number 7) High satisfaction and pain relief of the participants as detected by a qualitative satisfaction questionnaire Conclusion: The project demonstrated the good results of the holistic approach in the patients who took part in the program that reported the improvements of their quality of lives and relieve from their daily pains. The Self-mutual help group was the most appreciated free service, in which participants shared personal stories and perspectives thoughtfully and courageously. The training initiatives organized in collaboration with physicians helped them to learn tips for a better lifestyle management, diet and exercise, and psychosocial techniques but above all helped to overcame concerns and frustration regarding the lack of understanding in the medical community. The network succeeds to increased awareness and understanding of FMS across the public opinion and GPs. References: [1]Author: S.Mingolla, APMARR Project Manager; Co-authors: A.Celano, APMARR President; I. Cinieri, Psychologist, A. Marsico, Rheumatologist Disclosure of Interests: None declared