Role of the patients associations on dealing with fibromyalgia patients: the Italian experience

Egidio Riva, Giuseppina Fabio, Piercarlo Sarzi-Puttini
Associazione Italiana Sindrome Fibromialgica (AISF-onlus), Italy

Background
The need of patients associations is quite relevant when you deal with chronicity; there are a variety of unmet needs that patients associations can take care of starting from patients proper information, visibility, political issues and funding among the others.
Clinicians face a rather difficult task in fibromyalgia: to guide patients on what may be a syndrome which will be present and influence in a relevant way the journey of their lives. Clinicians  must preserve their patients' hope and resilience while at the same time giving them accurate information. And patients with fibromyalgia face a  difficult task: navigating a route while confronting a chronic and treatment-resistant disease. Communication between patients with fibromyalgia , their familial and social environment, and the treating clinicians may present many challenges.  Comunications between physicians and patients may improve; patients need easier access to information about their medical condition and their health care; patients associations can help to deliver patient-centered  care, reflecting to  what is important to them, and how to endorse relationships between health care professionals and patients that should be  stronger, more  trusting, and empathic.

Education and Information
AISF (Italian Association of Fibromyalgia Syndrome) was founded nearly 15 years ago with the mission of obtaining  the recognition of Fibromyalgia as a discrete entity and with the willingness of educating both the clinicians and the patients on recognising this diagnosis and treating properly the patients affected by this syndrome. One of our main activities is concentrated on spreading out the knowledge of the existence of this syndrome.  Patients need to know the upcoming news  and AISF takes care of an yearly National Congress where professionals  open their knowledge in the various subjects of their specialities and answer to general and personal questions. A dedicated booklet “Manuale pratico per il paziente affetto da sindrome fibromialgica”, which is regularly updated and which probably will have this year an English edition as well, explains the main contents of symptoms, diagnosis, pharmacological and non-pharmacological treatments; 28 authors  develop topics on Fibromyalgia on 13 chapters addressed to patients and to health care professionals. AISF takes care and issues complete scientific and information literature addressed to patients and professionals. A six-monthly paper, called “Caleidoscopio”, reports  recent studies and specific informations on the activities organized by the local sections and an Internet account  gives  general information on all activities.  General practitioners  who take care of family based public health need to be updated about diagnostic procedures and  appropriate therapies to be prescribed according  to their  personal  knowledge and the informations derived by the specialists and by the evidence-based literature. AISF  organizes  Regional Courses for health care professionals  to let them expand their knowledge on this topic. 

Self Help Groups
AISF  has 20 Sections spread out in the majority Italian Regions;  their mission and action is supported by the main head office based in Milan. Sections are managed by voluntary referees: two patients and one Doctor mostly often specialized in Rheumatology or in Pain medicine. Sections take care of organization of  periodical events dedicated to associated and non associated  patients.  Some of the  conferences and meetings are organized for clinicians  with different specializations but interested in chronic pain.   AISF promotes the idea of self-management and creates self-help group among patients where it’s possible. Our main office and the local sections provide  continous  personal informations through  telephone calls  and mail assistance to all patients who need for practical and psychological support. It is helpful when we may suggest where dedicated and specialised hospitals departments are located on the nearby for quick and easy assistance. Experianced patients  are supporting other newly-diagnosed patients  with suggestions  and advices on how to do and how to manage their day by day life,  to survive to their pain and to handle frequent misunderstandings  by families and sometimes by clinicians  that do not ricognize this syndrome as a clinical entity or do not have enough scientific knowledge to deal with.

Political Issues
One of the main controversies in Italy is to have Fibromyalgia recognised  by  Public Health Assistance Institutions; this will help scientific and pharmaceutical researches and will reduce the costs for the patients. AISF political activity is continously and deeply dedicated to contacts   with National and Regional Institutions  looking for having the opportunity to request and  to obtain  the syndrome to  be included by law into chronic diseases sponsored  by the Italian Public Health System.