Current perspectives of therapeutic patient education in Italy

International Review of Asthma, 2004, 6, 3: 52-61. THERAPEUTIC PATIENT EDUCATION IN ITALY: A CRITICAL OUTLINE *Renzo Marcolongo, MD, and **Leopoldo Bonadiman, MD. * Senior Staff Physician, Haematology and Clinical Immunology Unit, Padua University Hospital ** General Practitioner, Padua District Health Service. THERAPEUTIC PATIENT EDUCATION LABORATORY, PADUA UNIVERSITY HOSPITAL AND DISTRICT HEALTH SERVICE Correspondence to: Dr. Renzo Marcolongo, Azienda Ospedaliera-Università, Dipartimento di Medicina Clinica e Sperimentale, via Giustiniani 2, 35128 - Padova, Italy; tel. ++ 049 8212298, fax ++ 049 8754179 e-mail renzo.marcolongo@unipd.it. 1 International Review of Asthma, 2004, 6, 3: 52-61. SUMMARY. In Italy, the incidence of chronic diseases shows a progressive increase. Therapeutic Patient Education (TPE) is a low-tech and low-cost strategy that, by promoting the empowerment and expertise of patients and their families, actually engages them in the management of disease. TPE was first introduced in Italy in the early sixties for diabetic patients. Nowadays, TPE is extending also to patients with bronchial asthma and other respiratory diseases; in addition, across Italy, a number of pilot educational experiences are now concerning patients with other chronic diseases such as systemic lupus, obesity, organ transplantation, acute myocardial infarction, anticoagulant therapy, renal insufficiency, multiple myeloma, etc.. Although, there is no doubt that, to face successfully chronic diseases, a wellcoordinated teamwork between patients, their families and healthcare professionals is a mandatory issue, the implementation of TPE in standard care protocols still meets a significant resistance. A number of different cultural, economical and political factors may explain this situation. INTRODUCTION By forcing patients within previously unknown limits, chronic disease compels them to find new meanings in their life together with effective coping strategies. Hospitalisation, drugs, diet, clinical checks, functional and physical restrictions, rehabilitation and complications become a new part of patients’ reality, influencing every aspect of their life. Thus, in order to help adaptation to this new condition, it is worth to provide them with adequate skills by means of a specifically conceived training. According to a definition of a World Health Organisation working group, Therapeutic Patient Education (TPE) is “designed to enable a patient (or a group of patients and families) to manage the treatment of their condition and prevent 2 International Review of Asthma, 2004, 6, 3: 52-61. avoidable complications, while maintaining or improving quality of life” (1). Unfortunately, the vast majority of Italian healthcare personnel still miss the difference between passive patient information and active patient involvement by TPE. Indeed, while information usually consists in simple explanations, suggestions and prescriptions, active patient involvement by TPE is a much more interactive and person-centred process. Therefore, it involves the skilful implementation of specific teaching techniques aimed at developing patient’s empowerment and participation in the management of disease. Yet, official curricula for Italian healthcare personnel do not include specific TPE training modules. Only recently, the University of Foggia, in Southern Italy, planned a three-year course on this topic in collaboration with Paris-XIII University. This article briefly illustrates current situation of TPE in Italy, providing a general outline of more important and structured experiences. It also discusses some cultural and economical factors influencing TPE diffusion in our country. CHRONIC DISEASES IN ITALY According to an official report of the National Institute of Statistics (ISTAT) (2), one Italian out of three suffers from a chronic disease, while one out of five declares to suffer from at least two chronic ailments (3). Furthermore, in the last three years, the incidence of chronic diseases in our country showed a slow but progressive increase. Eighteen Italians out of one hundred suffer from arthrosis or arthritis, ten have arterial hypertension while four experience a cardiac disease (the leading cause of death in our country). Allergic people are approximately ten millions, allergy being the third leading cause of chronic disease after arthrosis/arthritis and hypertension. Among allergic diseases, asthma goes often unrecognized, having a predominant diffusion amid children and adolescents. Chronic Obstructive Pulmonary Disease is the fourth 3 International Review of Asthma, 2004, 6, 3: 52-61. leading cause of chronic disease in our country, affecting about four millions people; 30.000 of them have a respiratory insufficiency requiring a daily oxygen supply. Diabetic patients are more than two millions, while obese people are about 4 millions and their number is growing both between adults and children/adolescents. It is assumed that, in Italy, at least two millions people have a severe condition of osteoporosis with a high risk of bone fracture. In 1999, preventable osteoporosisrelated fractures have been 78.000, for a total amount of 550.000 euro. Alzheimer patients are about 450.000, the majority of them being supported almost entirety by their families. In 2001, Parkinson’s disease patients were at least 200.000, while those who suffered from multiple sclerosis were 50.000. Chronic fatigue syndrome affects about 300-400.000 people that yet do not receive any support from National Health Service (NHS). Urinary incontinence concerns three millions people, while patients suffering from a chronic kidney disease are 39.000. People having an enteric disease are at least 100.000. In 1991, the incidence of hepatitis was of seven cases per 100.000, people aged from 15 to 24 being most commonly affected. From January 1982 to June 2003, AIDS cases recorded in our country have been 51.968. Every year in Italy there are 28.000 newborns bearing malformations, of whose the 30% will survive with a severe degree of disability. NHS POLICY FOR CHRONIC PATIENTS In last decades, birth rate of EU countries has been progressively falling down along with an increase of citizens’ average age. In addition, a massive immigration from extra-EU countries is now heavily challenging EU health and social security systems. These social changes, along with a constant increase of health care costs, have progressively caused the slow but irreversible erosion of public health 4 International Review of Asthma, 2004, 6, 3: 52-61. services in many EU countries. Consequently, also the Italian Government has been gradually tightening its control on public health expenses. With the aim to cut down costs, Italian NHS has shifted its organisation from a predominantly hospital-centred pattern to a system based mainly on primary care and outpatient health facilities, hospitalisation being strictly reserved to critic or severely ill patients. Consequently, forced discharge of chronic patients from hospitals has become an increasingly diffuse phenomenon, actually revealing the insufficiency of primary care network. Moreover, communication and networking between hospitals and primary care facilities are still insufficient. This means that, after hospital discharge, people suffering from a chronic disease sometimes follow erratic and bureaucratized tracks that do not fit their needs. This problem becomes particularly evident among fragile and disadvantaged social categories, such as elderly or terminally ill people (Figure 1). According to a recent survey of the Italian Tribunal for Patients’ Rights (3), patients meet major problems when seeking information (that is inadequate for the 9.4% of the sample or erratic for the 13.4%). The 19.9% of the sample also complains a lack of attendance by their doctors and, finally, the 11.3 % reports a needless bureaucratisation of therapeutic tracks and procedures. Anyway, professional quality and expertise of Italian healthcare workers are out of discussion, the main problems being the accessibility and humanisation of health care service. For the above-mentioned reasons, systems that improve coordination between the two levels of health care are now essential to improve management of chronic diseases (4). However, we think that, in order to provide a truly convincing answer to this problem, a wise public health policy should also plan the active engagement of patients and their families in the management of their own health (Figure 2) (5). 5 International Review of Asthma, 2004, 6, 3: 52-61. Nevertheless, at present, their practical involvement by NHS institutions in the management of diseases is usually insufficient or erratic. THERAPEUTIC PATIENT EDUCATION IN ITALY: A SLOWLY EXPANDING ARCHIPELAGO So far, an official, even if incomplete, inventory of TPE programmes taking place in our country is still lacking. Consequently, collecting or retrieving data about this topic is very difficult; therefore, the present article actually does not provide a complete outline. We explored the INTERNET by means of two search engines (www.virgilio.it and www.google.it), matching and crossing different combination of the following key words: patient, therapeutic education, therapy, self-management and chronic disease. To check out medical literature about TPE in Italy, we consulted the U. S. National Library of Medicine database (http://www.ncbi.nlm.nih.gov/PubMed). We reported only projects or experiences describing a structured and truly interactive educational approach to patients. Diabetic patients. Patient education was first introduced in Italy in the early sixties by some diabetes specialists (6) in Turin, La Spezia and Rome. In the seventies, in North-Eastern Italy, the hospitals of Vicenza, Rovigo (for adults) and Padua (for children) started regular TPE programmes for diabetic patients. In 1982, the Government of Venetian Region, made the first formal acknowledgment of TPE by the institution of educational summer school-camps for diabetic children. Nowadays, summer camps for diabetic children and adolescents are a widely diffuse practice across Italy (7). The G.I.S.E.D. (Italian Study Group for Education in Diabetes) gathers all Italian physicians engaged in the education of diabetic patients. Established in 1980, it encourages the diffusion of TPE across Italy, by promoting both educational investigation and training among healthcare personnel taking care of diabetic 6 International Review of Asthma, 2004, 6, 3: 52-61. patients (the AMD, i.e. the national association of Italian diabetes specialists, founded a specific training school). The GISED is now taking a census of the Italian centres providing diabetic patients with formal TPE programmes. Though basic education is of necessity assured in all Italian centres for diabetic patients, some health institutions among the others, like Cinisello Balsamo, Parma (8), Brescia, Rome (9), Scandiano, Pisa, Padua (10), Reggio Emilia and Modena, are particularly active in the promotion of TPE. In particular, Brescia hospital is carrying out a disease management programme in collaboration with the College of General Practitioners (GPs) and the local Association of Diabetic Patients. Two fundamental acts: the "Provisions for the prevention and the cure of the diabetes mellitus" of 1987, and the "Convention on the rights of the child, New York, 20 November 1989" of 1991, are a clear reference to the laws promulgated in Italy to protect the special needs of children and adolescents with diabetes (11). In particular, they acknowledge and emphasize the social value of the disease and the importance of the relationship with families. They also encourage the cooperation and integration among primary care facilities, hospitals and social services for the complete protection of patients with diabetes or other disease. The National Law n. 115 of March 1987 and the State-Region Pact of June 1991 formally acknowledge patient education for type 1 diabetes in our country. Obese patients. In 2000, the Clinical Nutrition Unit of Padua University Hospital, in collaboration with our TPE Laboratory, started a TPE experimental programme for adult obese patients. At the same time, the Endocrinology Unit of Paediatric Department of Ferrara University started a pilot study based on an educational and behavioural therapy approach involving obese children/adolescents and their families. Results’ evaluation and publication are in progress under the supervision of our Laboratory. 7 International Review of Asthma, 2004, 6, 3: 52-61. In Bologna, the University hospital is carrying out a disease management programme on metabolic syndrome in collaboration with the District Health Service. Patients with chronic bronchial and lung diseases. Soon after the GISED, the GEPOR (Group for the Education in Chronic Obstructive Pulmonary Disease) started to promote the diffusion of TPE programmes for asthmatic patients across Italian hospitals. However, even if formal education for asthmatic patients is performed in many respiratory and allergy units and rehabilitation centres, they still wait to be regulated by a specific national law. Formal educational programmes for pneumopathic patients have been carried out in Rome (12), Veruno (13), Pavia, Palermo, Ancona, Verona, Bussolengo, Parma, Modena, Reggio Emilia and Crema. In Perugia, the Interuniversitary Experimental Centre for Health Education, together with the Paediatric Clinic of the University Hospital, developed an educational programme for asthmatic children and their parents. Recently, the Pneumology Units of Bologna, Siena, Naples, Tradate (14) and Rivolta D'Adda set up a cooperative patient education network under the coordination of La Spezia hospital (pieraldo.canessa@ausl5.la-spezia.it). Education includes the utilization of medical devices such as inhalators and oxygen therapy. Like for diabetes, the GPs’ role in asthmatic patients’ education is crucial. Cooperative experiences between specialists and GPs have been carried out in Brescia, Bussolengo and Tradate, in North-Western Italy. In 2002, our Laboratory started an experimental educational programme for asthmatic patients attending a GP consulting room in Padua. During a series of structured teaching sessions, small groups of patients received information about 8 International Review of Asthma, 2004, 6, 3: 52-61. disease and treatment and learned some basic self-management skills from their GP. Clinical and pedagogical evaluation of the programme is in progress. It is also worth mentioning that the national law n. 548 of December 1993 makes some general recommendations concerning the education of patients with cystic fibrosis. Patients with cardiovascular diseases. Structured TPE is performed in Modena District Health Service (“Competent Citizen Laboratory”), in Padua University hospital and in Feltre hospital. In particular, the Cardiology Clinic of Padua University developed two specific educational training programmes: one for patients with myocardial infarction and one for people taking oral anticoagulant therapy (15). The Medicine Unit of Feltre hospital (North-eastern Italy) is regularly performing TPE for patient taking digitalis, diuretics and oral anticoagulants, in collaboration with our Laboratory (16). The Heart Transplantation Centre of Padua University Hospital and our Laboratory have recently undertaken a TPE programme for patients undergoing heart transplantation. Nephropathic and dialysed patients. According to available data, the Nephrology and Dialysis Units of Turin (17) and Udine officially train their patients to self-manage peritoneal dialysis at home. In 2002, the Dialysis Unit of Cittadella hospital, in Padua district, started a formal TPE programme for patients undergoing periodical haemodialysis under the supervision of our Laboratory. Patients suffering from autoimmune diseases. In 1995, our Therapeutic Patient Education Laboratory (e-mail: educazione.terapeutica@unipd.it) started its educational activity for patients suffering from systemic lupus erythematosus (18) attending the Haematology and Clinical Immunology Unit of Padua University Hospital. Two years later, we started the education also for patients with systemic 9 International Review of Asthma, 2004, 6, 3: 52-61. sclerosis. In the implementation of TPE, our laboratory follows some well-defined methodological steps (19-20). Neoplastic diseases. True TPE experiences in this delicate field are uncommon. Actually, the vast majority of studies and programmes concerning patients carrying a neoplastic disease are mainly targeted to psychological aspects and to the management of communication with patients and their family. In 2002, our TPE Laboratory devised an experimental TPE programme for elderly patients (over 65 years) suffering from multiple myeloma (MM), attending Padua Haematology and Clinical Immunology Unit of Padua University Hospital (21-22). Usually, these patients have to take long-term oral chemotherapy to maintain the disease under control; moreover, they must adopt adequate safety behaviour in order to prevent disease or treatment related complications, such as bone fractures and opportunistic infections. Since many elderly MM patients are partially or completely not self-sufficient, TPE concerned also their closest family members. This year, our TPE laboratory is going to extend TPE also to patients with lymphoma and leukaemia; both hospital personnel and GPs of Padua district taking care of the same patients are involved in the project. According to our data, since 2003, the Oncology Unit of Vittorio Veneto hospital together with the Antalgic and Palliative Care Unit of Conegliano hospital, in NorthEastern Italy, are developing a TPE programme to train patients carrying a central venous catheter for chemotherapy. THERAPEUTIC EDUCATION: A RESOURCE FOR PATIENTS AS WELL AS FOR THEIR CARERS At present, formal acknowledgement of patient education in standard care protocols is limited to diabetic patients. Nevertheless, compatibility of TPE with current NHS standards of care remains difficult. Indeed, the increasing lack of time and the shortage of human resources hampers the implementation of patient 10 International Review of Asthma, 2004, 6, 3: 52-61. education in many places. Moreover, we think that, besides lacking resources, the steady inclusion of TPE in professional practice can be at least in part impaired also by conflicting cultural, hierarchical or economical interests between different healthcare professionals; wrong or scarce mutual knowledge between people working in different health institutions represents an additional problem. In facts, in order to be properly accomplished, TPE involves an open-minded professional approach and a strong availability to inter-professional as well as to interdisciplinary work. Furthermore, we think that in order to develop a confident partnership, doctors and nurses should learn to work “with” rather than “for” patients: in other words, rather than talking, they should learn to listen to patients more carefully, in order to “decode” their personal views, representations and needs (23) and to carry out a collaborative work. In this view, training healthcare professionals to TPE might contribute to change their attitude toward patients. Therefore, national or institutional training programmes for healthcare personnel should always include TPE (24). According to the principle of “Servuction” (Eiglier e Langeard, 1988) (25), customers (in this case, patients) may actively interact with a service-supplier (in this case, NHS) to produce a final product (in this case, health). In this view, every citizen, no matter if healthy or ill, is asked to share a direct and conscious responsibility in the management of his/her own health condition. Actually, TPE is the only way to teach patients and their families how to self-manage their disease in collaboration with their doctors, yielding sound and measurable outcomes. In this view, the availability of common evaluation standards and criteria will make possible the objective assessment of likely clinical, economical and social benefits of TPE. In this way, TPE will meet the criteria of quality, property and continuity of a modern health system. 11 International Review of Asthma, 2004, 6, 3: 52-61. In conclusion, “competent patients” are likely to become a true resource for themselves as well as for the people that take care of them. 12 International Review of Asthma, 2004, 6, 3: 52-61. Figure 1. Problems that patients with a chronic disease are likely to come across after discharge from hospital • Chronically ill patients (Alzheimer, Hospital cardiovascular, arthritis and joint diseases, disabling illness, etc.) • Terminally ill patients • Psychiatric patients • Day-Surgery e Day-Hospital • Elderly patients LACKING or INSUFFICIENT COMMUNICATION and TEAMWORK with patients and their families and between healthcare professionals DISTRICT HEALTH FACILITIES Patients and their families run the risk of taking wrong or improper “tracks” Therapeutic Patient Education Laboratory, Padua University Hospital, Italy 13 International Review of Asthma, 2004, 6, 3: 52-61. Figure 2. Possible benefits of active patient engagement in health care. • Chronically ill patients (Alzheimer, cardiovascular, arthritis and joint diseases, disabling illness, etc.) • Terminally ill patients • Psychiatric patients • Day-Surgery e Day-Hospital • Elderly patients HOSPITAL DISTRICT HEALTH THERAPEUTIC EDUCATION a continuing process assuring HEALTHCARE CONTINUITY FACILITIES HOSPITAL HEALTH TEAM DISTRICT HEALTH TEAM establishes with patients a establishes with patients a “security agreement” “individual health agreement” to prevent the causes of hospitalization dealing with everyday patient’s needs direct engagement of patients and their families in the management of the disease Therapeutic Patient Education Laboratory, Padua University Hospital, Italy 14