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AIPA NEWS

T he ant i c o ag u l ate d p at i e nt s’ mag a z ine U n i c q u e P u b b l i c a t i o n - Ye a r 2 0 1 6 No periodic pubblication not subjected to registration requirement ex art. 5 L. n. 47/194p

Inte r nal bulletin of the Associazione Italiana Pazie nti Anticoag ulati

THE DECALOGUE FOR PATIENTS’ RIGHTS pag. 2

AOT: WHAT ARE THE PATHOLOGIES pag. 12

NEWS FROM A.I.P.A. OF ITALY pag.21

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I am proud to present you again: AIPA News, devised by AIPA Padua over twenty-five years ago to keep informed anticoagulated patients with regional activities and to tell us what unites us and makes us strong. It has been a year since I was elected Feder-A.I.P.A. National President. In this short time, I found that the Our goals, shared in dialogue and mutual respect, can lead to good results in practice. Thanks to the tireless support of the Executive Council, the Scientific Director, the other volunteers and friends who support me, we did a lot. In summary: we organized a scientific conference in the national interest on the twentieth anniversary and the seventeenth ^ anticoagulated patient’s National Day; some events held in the square for screening against atrial fibrillation (www.giornatafibrillazioneatriale.it); supported A.I.P.A. “weaker” sections; prepared some publications on the direct anticoagulant drugs; updated contents of the web site www.federaipa.com; planned events for the current year. This year, we want to do even prevention of atrial fibrillation during the Atrial fibrillation World Day which will be held on September 10. That day, with the aid of cardiologists, nurses and volunteers, we will be in the squares of Italy to discover, among the unaware citizen, who has a suspected “asymptomatic” atrial fibrillation. The screening to prevent the risk of atrial fibrillation (eg. Stroke) is simply the measurement of blood pressure and heart rate. Few minutes to start a path that can save lives. The national anticoagulated patient’s day, now in its eighteenth edition, will be held on 1 October. While deciding the place, we are preparing the content for the event. How? Collecting some data, using a questionnaire, to assess the economic dimension of the patient with atrial fibrillation. If you have this condition, I invite you to participate by filling in the enclosed questionnaire or online at www.federaipa.com Certainly there is still much to do to improve the quality of life of anticoagulated patients, to avoid closing off the Oral Anticoagulated Therapy monitoring centers, to get how to access the uniform treatment in the territory and for all anticoagulated patients. We are working actively to achieve the desired results. In this issue you will find the Decalogue of the Rights of anticoagulated patients, in short, by local A.I.P.A. sections, we collect the signatures of those who will support us in the ambitious project to reach ten thousand. Then, numbers in hand, we will present the document to the institutions to give us listening. In addition, we will be present in Brussels on May 4 to bring our witness to the European Day of Patients’ Rights. The Feder-A.I.P.A. National President Merlin Nicola presidenza@federaipa.com

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THERIGHTS OFTHE ANTIC OAGU THE DECALOGUE OF THE ESSENTIAL SERVICIES FOR AN EFFECTIVE AND SAFE ANTICOAGULATED PATIENTS THERAPY BUILD THE NETWORK OF SERVICIES FOR ANTICOAGULATED PATIENTS

1)INCREASE THE QUALITY OF THE ORAL ANTICOAGULATION THERAPY ACCESS POINTS Citizens in anticoagulation therapy are over one million, with upward trend. This therapy is life-saving and can currently make use of different drugs. Whatever the drug used, anticoagulation presents risks of bleeding and reduced protection. The risks increase if the therapy is conducted poorly and if it lacks healthcare services and medical performance needed for its quality. 2)ADJUST THE FREQUENCY OF PATIENT’S INR MEASUREMENTS Until a few years ago, the vitamin K antagonist (VKAs, Coumadin and Sintrom in Italy) have been the only oral anticoagulant drugs available and they are still the most AIPA NEWS

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used. The VKA oral anticoagulants require frequent laboratory monitoring and a consequent suitable adjustment of the daily dose. Insufficient quality of this monitoring activity (low level of time spent in the desired therapeutic range) reduces the efficiency and increases the risk of anticoagulation; therefore, patients are exposed to more thrombotic or bleeding complications.

3)IMPROVE PATIENTS’ AND FAMILY CAREGIVERS’ QUALITY OF LIFE Health services must provide to make available periodic INR test (essential for VKA) with modalities of access that favors the patients’ quality of life (and of their relatives) and with suitable quality of execution (laboratory or portable intstruments, subjected to quality control) reducing as much as possible the need of patient displacements (and of their relatives) and providing appropriate services to patients with limited mobility.

AVK drug is critical for safety and effectiveness of the therapy. This requires training and experience. Specialized medical centers, dedicated to the control of anticoagulated, are particularly suitable for this purpose. General Practitioners can play this activity after adequate specific training, with the use of computer tools to help in establishing dosages, and connection/ collaboration with specialized medical centres, territorially organized (network of services for anticoagulated patients).

5) ENSURE THE ANTICOAGULATED PATIENT’S RIGHT OF CHOICE Citizens in anticoagulant therapy with VKA should be given the right to choose who to entrust the monitoring and management of their own therapy. Patients have a right to require the retention of data relating to the Oral Anticoagulated Therapy requirements, at speciali-

4)ENSURING PERIODIC EDUCATION AND SERVICIES NETWORK FOR ANTICOAGULATED PATIENT Proper adjustment daily dose of 2

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S

U L AT E D PAT I E N T zed medical centers. In this case, the Oral Anticoagulated Therapy must be registered in a database and specialized medical centers may be authorized by patients to monitor network data and interact with prescribers Doctors according to well-defined protocols (in respect of privacy provisions).

ned. There is entirely unsufficient attention to the necessary training of health personnel to manage these drugs and to provide the essential information of the patients. These drugs do not require periodic monitoring, but they are however, essential services protection of the treated patients.

6)SPECIALIZED CENTERS: REFERENCE POINTS FOR TRAINING AND INFORMATION Specialized centers must be established territorially, as a reference for doctors and patients in situations that require special expertise and experience (management of possible complications or in anticipation of surgery and invasive maneuvers). The Centres will also play employment and training function (related to anticoagulation) for healthcare professionals and patients.

8)NETWORK SERVICES FOR ANTICOAGULATED PATIENTS The Network of services for anticoagulated patient (collaboration among expert centers, doctors General practitioners and specialists prescribers) should help to inform patients treated with NOA (indispensable to obtain the appropriate level of adherence to therapy) and ensure the necessary Clinical and laboratory skills if they are to address various situations that may occur during treatment.

7)TRAINING AND INFORMATION FOR EACH ANTICOAGULANT THERAPY For some years now are employed in clinical practice new oral anticoagulant drugs (NOA), for completely different action by VKA. In our country their prescription is gover-

9) EXPECTED TIME AND CLEAR OBJECTIVES FOR REGIONS ORAL ANTICOAGULATED THERAPY MANAGEMENT PLANS Patient Associations Anticoagulation demanding that Health Services Regional make explicit, in a defined period of time, a general plan on how to organize their 3

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services for anticoagulated patients (whatever the drug employed) and that such plans are presented and discussed with representatives Associations.  

10)INVOLVEMENT OF PATIENT ORGANIZATIONS Patient Associations Anticoagulation Companies are demanding that Territorial health make explicit the organizational design of Services intending to implement for anticoagulated in their territory of competence, including and appropriately integrating existing resources and expertise.The organizational plan must be presented and discussed with the patient organizations (local or regional).

AIPA NEWS 

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Why do a set of guidelines for patient’s rights? Gualtiero Palareti Professor of Cardiovascular Disease University of Bologna A.I.P.A.-Bologna President www.anticoagulazione.it gualtiero.palareti@gmail.com

Our strategic objective is: to create a strong connection between specialists, patients and the associations that represent them as Feder-A.I.P.A.; to exercise with more weight on the institutions and health facilities, and thus ensure greater protection of the rights of the patients themselves. The portal anticoagulazione.it was born for this purpose, to provide a tool that can be used in some way by both professionals by patients and their associations and to carry out educational and information initiatives as the conference we organized in January in Bologna with the economic and organizational support of the Arianne Foundation. With these initiatives, we sought a meeting point with patients because professionals alone are not sufficiently heard from public facilities who see them as representative of particular interests and not general and shared ones. If next year there will be the resources, AIPA NEWS

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there will be a new edition of the conference. On this line we have thought of something very concrete, the Decalogue. The idea was to write a document that the public structures could easily read, that was synthetic, which detect the essential points, simple and especially felt by patients and shared by professionals. We believe that these essential points, we called Decalogue, it should be shared and supported also by the local sections through membership signed by the shareholders. Why? Because politicians at the local and national level give a different weight to the demands if they come from those directly involved as well as by professionals. If we can pick up, for example 10,000 signatures on a document like this, we would have a different weight than a written document and presented only by some professional. With a shared and signed document we 4

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is not a calculation that can be done only in the short term. So this is the project, create a link between patients, professionals and their associations and find a concrete point in a list in which we ask the essential things, such as training of the family physician, a network that goes by the general practioner to a most specialized center and so on. The anticoagulated patients must have a structure that preserves them, trained specialists, and a center that can follow them in the most difficult situations. The Decalogue will be disseminated through the structures we already have, such as the portal and A.I.P.A. (Italian Association of Anticoagulated Patients) network, but we can activate collaboration with the local and national press. We prefer not to anticipate the press the contents of the Decalogue, if behind there is not yet the strength of the signatures. If this document is taken up by a good number of citizens will have an important place and many newspapers may acquire it and relaunch as a message, but in order to succeed it has to be shared. So local A.I.P.A. are asked to spread and have it signed with the recording of the identity document (because the signature has value). It would be optimal to collect signatures also of patients followed by the general practioner, as well as those which are treated with one of the new oral anticoagulants. We ask the local A.I.P.A. to make this effort. This if you want to count and to have concrete answers.

press harder on institutions to have what is necessary to ensure patient safety. Today we are faced with a deconstruction of specialized centers. Patients are sent to the family physician, proceedings against we have nothing, but we think the physician should be made experienced. We think that in addition to a degree in medicine is necessary also a specific training to manage a patient in anticoagulant therapy. The Decalogue tip is to say, not that we support the transition to general practitioner, but that we must train this specialist and that we want to make sure it is trained. Each point of the Decalogue should have both a theoretical fold and a practical aspect. There must be concrete adhesion, explicit and signed by the patient. I believe that this is an important moment for us and not to prevent them to do a renovation project, but to do so that in this project is included the quality and training. The renovation must include also patient information and specialists’ training and not only a calculation on savings. It is then a false economy, because if you close expert centers and patients rely to persons not adequately trained It means that you will have more complications, thus a greater risk for patients and more costs for the facilities. A severe bleeding costs a considerable sum, just think of only 10 days of hospitalization, medications, transfusions, etc.. The hospitals directors are working on a time goal of short term because they are in charge of a company for only four years. But the safety and lives of patients 5

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AIPA NEWS 

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