1. Mariella Martini Coordinator of HPH Emilia Romagna Regional Network Health Promoting Hospitals PATHWAYS OF INTEGRATED CARE FOR PATIENTS AFFECTED BY HEART FAILURE

2. (Ed Wagner, MacColl Institute for Healthcare Innovation) Informed, Activated Patient Prepared, Proactive Practice Team Productive Interactions Community Resources and Policies Health System (Health Care Organization) Self-Management Support Delivery System Design Decision Support Clinical Information Systems TARGET: PATIENTS WITH - NEOPLASTIC PATHOLOGIES - RESPIRATORY FAILURE - CARDIAC DECOMPENSATION

3. THE PATIENT-PERSON: Decisions based on weighted judgements (Illness Histories) … as a method for: - systematising ideas and actions (finding a way out of the confusion “caused by complexity”, of the routine chaos) - identifying measurable spaces of efficiency (EBM) and effectiveness, (translating the evidence into “practices”: GOOD PERFORMANCE) - highlighting the “global” needs of the patient-person - assigning indicators for monitoring EFFECTIVENESS AND APPROPRIATENESS: Decisions based on scientific evidence (EBM-based decisions) Evidence-based Medicine Narrative-based Medicine

4. PALLIATIVE TREATMENT ………………………… …………………. PRESENCE OF THE PROBLEM IN-DEPTH DIAGNOSTICS COMMUNICATION DEFINITION OF PERSONALISED PROGRAMME. SHARED (agreed) THERAPY PROGRAMME. INTERACTIVE TREATMENT INTERACTIVE MONITORING * Is the diagnosis always informed? * To whom? * How and when? * Which family member is informed of the diagnosis? * Appropriate verbal (and other) language? * ………………………… * Am I the right professional figure? * Am I aware of my state of mind? * Do I possess the right resources to manage my emotions in this relationship? * ……………. * What is the structure and what are the internal relationships of the family? * Who is the reference figure within the family? * ……………. (PATIENT) PERSON OPERATOR FAMILY

5. A S S I S T A N C E P A T H as a useful model for considering not only clinical improvement but all other dimensions as well CURING THE DISEASE CURING THE SYSTEM CURING THE ILLNESS

6. Aims of the project To improve the organisation and quality of life of the patients with a more effective and efficient integrated pathology management, preventing unnecessary hospitalisation or reducing the length of stay To guarantee patient centrality To guarantee patient centrality (empowerment) To improve the appropriateness of the interventionsTo improve the appropriateness of the interventions centering them on the results, in terms of improved clinical effectiveness but also closer response to patient needs (not only E.B.M. but also patient life histories)

7. Working methodology Phase 1: analysis and development of diagnostic- therapeutic guidelines and organisational-relational protocols/recommendations Phase 2: preparation of theoretical path Phase 3: training programmes for all professionals in the network dealing with Cardiac Decompensation Phase 4: start of experimentation Phase 5: clinical audit to monitor the indicators

8. Working tools/1 Diagnostic-therapeutic guidelines and organisational-relational recommendations Path flow-chart Follow up sheet

9. Decompensated patient path PRESENCE OF SYMPTOMS 1 ST DIAGNOSIS GENERAL PRACTITIONER HOSPITAL REFERRAL TO LOCAL / HOSPTIAL SPECIALIST FOR FURTHER INVESTIGATIONS INVESTIGATIONS NYHA 3^NYHA 3^ NYHA 4^NYHA 4^ NYHA 3^NYHA 3^ NYHA 4^NYHA 4^ DECO MPEN SATI ON NO NYHA 3^NYHA 3^ NYHA 4^NYHA 4^ NYHA 3^NYHA 3^ NYHA 4^NYHA 4^ NYHA 3^NYHA 3^ NYHA 4^NYHA 4^ NYHA I CLASS NYHA II CLASS NYHA III CLASS NYHA IV CLASS YES

10. GENERAL PRACTITIONER COMMUNICATES DIAGNOSIS (or repeats the information given by the hospital/territorial doctor) AND EDUCATES THE PATIENT IN TERMS OF CORRECT LIFESTYLE, THE IMPORTANCE OF FOLLOWING THE THERAPY, AND THE RECOGNITION OF SYMPTOMS EARLY FOLLOW-UP STABLE PATIENT SENT TO GENERAL PRACTITIONER WITH DISCHARGE LETTER / SPECIALIST REPORT, COMPLETION OF DECOMPENSATION SHEET AND INDICATION OF PROPOSED THERAPIES AND FOLLOW UP STAYS IN CLASS I GP and specialists communicate by phone and internet NYHA 1 POSSIBLE ADJUSTMENT OF PHARMACOLOGICAL THERAPY GP SETS THE THERAPY AND FOLLOW UP (sets the next stage at each check up and notes it on the follow up sheet) NOYES SPECIALIST CONSULT SPECIALIST REPORT INDICATING ANY MODIFICATION IN THE THERAPY AND FOLLOW UP GENERAL PRACTITIONER COMMUNICATES OUTCOME TO PATIENT AND ESTABLISHES THERAPY AND FOLLOW- UP Example

11. Working tools/2 Self-monitoring sheets paziente: -Weight control sheet -Blood pressure control sheet -Physical activity monitoring sheet -Pharmacological compliance monitoring sheet Information booklet: given to patient at the time of diagnosis; strong educational impact, with little technical information Recipe book: given to patient at the time of diagnosis. Includes recipes suited to the whole family

12. Making a “therapy deal” with the patient involves: correct communication correct communication education of patient and family education of patient and family control of the adherence to the control of the adherence to the pharmacological and other types of therapy

13.  Transferring clear, appropriate messages to the patient concerning his pathology and checking his level of understanding  With the patient’s consent, transferring the same messages to her/his relatives and checking the level of understanding  Not having inattentive, distracted or didactic attitudes  Paying attention to the patient’s doubts, uncertainties and fears  Understanding and managing any attitudes of resentment the patient may have towards us IT IS FUNDAMENTAL FOR ALL THE INVOLVED PROFESSIONALS TO USE THE SAME LANGUAGE Communicating the diagnosis

14. Educating the patient/relatives Initial education at the time of diagnosis (by GP or hospital doctor), with patient/relative training aimed at self-monitoring Handing over information booklet Handing over the recipe book Continuous education by all the professionals involved in the path Yearly meetings with experts (diet, physical fitness, psychological reactions to the illness and management of such reactions…)

15.  Ask the patient if he has taken the prescribed medicines  Ask the relatives the same thing  Check the self-monitoring compliance sheet  Objectively assess the consumption of medicines  Check the expected effects of some pharmacological therapies  Investigate the low tolerance of particular medicines Checking pharmacological compliance ….

16. Checking the introduction Checking the diuresis Checking the diet in relation to any cardiovascular risk factors Checking life style Checking non-pharmacological compliance means….

17. USEFUL TOOLS FOR MANAGING CHRONIC PATIENTS Hospital Territory

18. IN GOD WE TRUST. ALL OTHERS MUST USE DATA. W.E. Deming

19. WHERE, WHAT, WHEN, HOW… TO EVALUATE?

20. INDICATORS opening of educational clinics managed by nurses opening of educational clinics managed by nurses number of patients following the path number of patients following the path use of tools use of tools home access by cardiologist home access by cardiologist PROCESS RESULT reduction in hospitalisation reduction in hospitalisation increase in the amount of Integrated Home Care increase in the amount of Integrated Home Care illness histories illness histories

21. Accountability