Improving quality of life for patients and carers in Alzheimer Disease: Behavioural disorders & Neuroleptics Dr Armelle Desplanques Leperre, MD, PhD Dr Nathalie Riolacci-Dhoyen, MD Pilot Program Clinical Impact Division of Quality and Safety in Health Care French National Authority for Health Disclosure Armelle Desplanques-Leperre Nathalie Riolacci-Dhoyen 1 Titulaire de brevets/porteur de parts sociales ou membre d une structure de gouvernance ou salarié NO 2 Consultant ou membre d un Conseil scientifique NO 3 Conférencier ou auteur/rédacteur rémunéré d articles ou documents NO NO 4 Prise en charge de frais de voyages, d hébergement ou d inscription à des congrès ou autres manifestations 5 Investigateur principal d une recherche ou d une étude clinique NO 6 Co-Investigateur d une étude clinique NO 2 1
1 STATEMENT PRIORITIES NEEDS Clinical expertise, care quality expertise, scientific litterature Health professionnals, Institutions, patients representative 4 RESULTS ANALYSIS IMPACT 2 TOOLS IMPROVEMENT GUIDELINES ASSESSMENT INDICATORS National platform 3 ACTIONS DISSEMINATION IMPLEMENTATION William Utermohlen s Self-portrait 1967 1996 1997 2000 1999 1998 2
Incurable does not mean without care Incurable does not mean without treatment New approaches? Incurable does not mean without a quality of care Overuse of antipsychotics? Contribute to caregiver burden Lead to Institutionalization Pertubating behavioural disorders - New care techniques Side effects of neuroleptics - Quality of life + 3
Tools for improvement Determining factors of the overuse of Neuroleptics Lack of guidelines about use of neuroleptics Misdiagnosis between confusion (delirium) and behavioural disorders Lack of information about the side effects of NL Lack of education on non pharmaceutical care techniques Guidelines Behavioural disorders : place of psychotropics and new cares techniques, warning about labelled indications & side effects of Neuroleptics Confusion : place of psychotropics, warning about labelled indications and side effects of Neuroleptics New care techniques Skill sets and specific training - identifying and dealing with aggravating factors Ex : towel bath in bed instead of shower. - communication training for staff and carers -. Rehabilitation : To train patients and carers to use the remaining capacities in order to compensate for cognitive decline New others approaches : reminiscence, validation, reality orientation, cognitive stimulation HAS 4
feel the sun warm my skin For once refuse to wash myself Non-pharmacological management of behavioural symptoms in nursing homes Audrey Deudon, Nathalie Maubourguet, Elsa Leone, Patrice Brocker, Laure Carcaillon3, Simone Riff4, Benoıt Lavallart and Philippe Henri Robert - Int J Geriatr Psychiatry 2009; 24: 1 10-62% BD at 2 months ; - 47 % at 5 months - 19% in control group Facing with Behavioral disorders What to do What not to do 5
Set of indicators - local Quality of care with good practice indicators NL Alert and Mastering Indicators (AMI) - pattern of psychotropic prescription - absence of daytime sedation - rate of physical restraint Quality warrant Tools for clinical teams: the AMI concept Acting (1) (2) (3) before during after the Neuroleptics prescription Avoid the risk New guidelines on behaviour disorders and confusion in people with AD that describe proper use of NL and other psychotropic drugs as well as new non pharmaceutical techniques of care Identify the risk Decrease the risk NL BD care Q of Life Local Alert Indicator to identify people with AD exposed to NL. Local warning signal = percentage of people with AD taking NL. This indicator is easy to measure in all care sectors Local Mastering indicator based on the review of prescriptions for identified people with AD exposed to NL, in order to correct inappropriate prescriptions. Indicator for risk containment = rate of NL prescriptions confirmed for people with AD 6
The AMI concept: ALERT 120 100 80 60 40 20 0 LOCAL ALERT = NL exposure Nb of patients exposed to NL (total = 250) 100/250 80/250 ALERT Indicator 40/250 40% 30/250 32% 16% 12% T0 T1 T2 T3 120 The AMI concept: MASTERING MASTERING = confirmed prescription 100 80 MASTERING Indicator 80% 60 50% 40 20 0 0 10% 8/80 20/40 Nb of confirmed prescriptions (total = nb of pursuited prescriptions) T0 T1 T2 T3 24/30 7
AMI: 2 measures to act 120 100 80 MASTERING Indicator 80% 60 40 20 0 ALERT Indicator 40% 0 32% 10% 50% 16% 12% T0 T1 T2 T3 24 on 30 appropriated 30 24 AMI: 2 measures to analyse % MASTERING Indicator 80 % 40 32 ALERT Indicator 10 0 50 32 (50 on 62 confirmed) 28% 16 12 % t (24 on 30 confirmed) 8
Set of indicators - AMI-Alzheimer Structures/National NL exposure of people with institutional warnings - in the French elderly and AD population (available) - in the hospital accreditation (on going measurements) - in nursing home accreditation (on going measurements) Pattern of psychotropics in the French elderly and AD (available) National Iatrogenic ALERT indicator Tools for assessment: National Alert (CNAMTS RSI MSA INVS HAS, preliminary results) 9
National Iatrogenic ALERT indicator French National Survey 2009 59,9% 39,8% 37,9% 35,2% 29,7% 13,9% Tools for assessment: Psychotropics Pattern (RSI MSA CNAMTS INVS HAS, preliminary results) 15,7% 12,3% 12,7% 10,0% 5,4% 3,0% Alzheimer : n= 441 942 > 65 : n= 10 253 516 HA: hypnotics anxiolytics AD: antidepressants Psychotropes HA AD NLP CoP BZD NLP: 1/2 neuroleptics 10
AMI-Alzheimer programme a complex issue for quality of care and quality of life for people with AD first encouraging results of the AMI- Alzheimer plan to achieve our objectives iatrogenic risk reduction (5% NL in 2012) quality of life improvement (no switch, better care) www.has-sante.fr «AMI-Alzheimer» French national Alzheimer plan 2008-2012 A financial effort on 5 years 200 M for research, 200 M for medical care 1,2 billion for medico-social support 44 solutions to improve quality of life for patients and carers Set up respiste care services (s1) Improve the caregivers rigths and education (s 2) Improve locally the coordination of all actors (MAIA, s 4) Reinforce home support of specialised professionnels (s 6) Reinforce the education and training of caregivers (s 20) Improve the prescription and prevent iatrogenicity e.g. neuroleptics (s15) 11
1 STATEMENT PRIORITIES NEEDS Clinical expertise, care quality expertise, scientific litterature Health professionnals, Institutions, patients representative 4 RESULTS ANALYSIS IMPACT 2 TOOLS IMPROVEMENT GUIDELINES ASSESSMENT INDICATORS National platform 3 ACTIONS DISSEMINATION IMPLEMENTATION MACRO National policy & actions MESO Regional strateges & programmes MICRO Local & Professional programmes Guidelines for care of AD and for caregivers, new competences, information campaign, National alert indicator and panel Accreditation, information campaign Alert indicator for hospitals or nursing homes Protocols, clinical pathways, multidisciplinary staff Alert & Mastering indicators, warrant indicators Family support Thank you for your attention pilotesprogrammes@has-sante.fr Many thanks to the French Task Force Agence française de sécurité sanitaire des produits de santé, Agence nationale d évaluation des établissements sociaux et médicosociaux, Association pédagogique nationale pour l enseignement de la thérapeutique, Association de prévention routière, Caisse nationale de solidarité pour l autonomie, Cercle de qualité des Ardennes, Collège national des généralistes enseignants, Caisse nationale d assurance maladie des travailleurs salariés, Collège national universitaire de psychiatrie, Collège professionnel des gériatres français, Direction générale de l action sociale, Direction générale de la santé, Direction de l hospitalisation et de l organisation des soins, Fédération française de neurologie, Fédération française de psychiatrie, Fédération française des associations des médecins coordonnateurs en Ehpad, Haute Autorité de santé, Institut de veille sanitaire, Institut national de prévention et d éducation pour la sante, Ministère de la sante, de la jeunesse, des sports et de la vie associative, Mission Sommeil, Mission de pilotage du plan Alzheimer, Mutualité française, Mutualité sociale agricole, Office parlementaire d évaluation des politiques de santé, Ordre des médecins, Ordre des pharmaciens, Régime social des indépendants, Regroupement scientifique des sociétés savantes de médecine générale, Société française de pharmacologie et thérapeutique, Société française de gérontologie et de gériatrie, Société française de documentation et de recherche en médecine générale, Société française de médecine générale, Société française de recherche sur la médecine du sommeil, Société de formation thérapeutique du généraliste. 12
European Joint Action ALCOVE ALzheimer COoperation and Valuation in Europe Armelle Desplanques-Leperre MD, PhD, Nathalie Riolacci-Dhoyen, MD French National Authority for Health Division of the Quality and Safety in Health Care Pilot Programs Clinical Impact Health Ministry HAS National Insurance Division for the Improvement of Quality and Safety of Healthcare Division for Medical Economic and Public Health assessments Division for care organization Mandatory standards for authorization (architecture, resources, competences ) & control procedures Enlightened information about quality of care Care organization improvement International scientific cooperations OUTCOME RESEARCH Pilots programs clinical impact, innovative methods, pathways & clinical situations Q & S ASSESSMENT hospital accreditation Assessment practices & continuous medical education quality standards, guidelines Practices Improvement Health profesionals HEALTH ASSESSMENT Procedures Technologies Drugs Strategies Reimbursement Advices for the implementation of innovation 13
Pilot Programs of HAS Objective : to achieve the clinical impact of quality improvements (clinical outcomes research) Topics : Medication in the elderly : iatrogenicity Antipsychotics in dementia Myocardial infarction Stroke Cardioneurovascular prevention Prostate cancer European Joint Action ALCOVE ALzheimer COperation and Valuation in Europe 14
27 Partners, 14 countries Haute Autorité de Santé (France); King Boudewijn Foundation (Belgium) ; National Institute for Health and Welfare (Finland) ; INSERM (France) ; APHP Espace Ethique (France); Athens Association of Alzheimer s Disease and Related Disorders (Greece); National Institute of Health, National Centre for Epidemiology, Surveillance and Health Promotion (Italy); Ministry of Health, Directorate General for Prevention (Italy); University of Brescia, Neurology Clinic (Italy); Riga Center of Psychiatry and Addiction Disorders (Lettonia); Kaunas University of Medicine (Lituania); Institute of Neuroimmunology Academy of Science (Slovakia); Fundación Vasca de Innovación e Investigación Sanitarias (Spain); Institute of Health Carlos III (Spain); Karolinska Institutet (Sweden); Department of Health (UK) Mental Health Services, Ministry of Health (Chypria) Ceska alzheimerovska spolecnost (Tcheque Rep.); University of Szeged - Szegedi Tudományegyetem (Hungaria), ; Ministry of Health (Lituania);Vilnius University Faculty of Medicine(Lituania) ; Ministère de la Santé (Luxembourg) ; Ministère de la Famille et de l'intégration (Luxembourg) ; Dipartiment ta l-anzjani u l-kura fil- Kommunita, Diviżjoni Servizzi tal-kura tas-saħħa, Ministeru tas-saħħa, l-anzjani u l-kura fil-kommunita (Malta) ; Ministry of Health, Welfare and Sports (Netherlands) ; Ministry of Health and Care services (Norvege) ; Coordenação Nacional de Saúde Mental, Alto Comissariado para a Saúde, Ministério da Saúde (National Coordinating Body for Mental Health) (Portugal) ;Ministerstvo školstva Slovenskej Republiky, Bratislava (Slovakia) ; Spanish Ministry of Health (Spain) ;Dementia Services Development Centre University of Stirling (UK) Challenges To better understand, detect, prevent and combat AD and other dementias in European countries: To set up a sustainable European network for sharing experiences To improve knowledge & to formulate recommendations in order to facilitate health care decision making 4 fields with a common focus on psychotropics risk reduction in AD and other dementias 15
4 fields - workpackages WP1 : Coordination of the Joint Action Haute Autorité de Santé (France) WP2 : Dissemination of the Joint Action Institute of Health Carlos III (Spain) WP3 : Evaluation of the Joint Action Institute of Neuroimmunology Academy of Science (Slovakia) WP4 : Cohorts, Epidemiology and registration network National Institute of Health, (Italy) WP5 : Early diagnosis Department of Health (Royaume Uni) WP6 : Existing practices Dementia care models National Institute for Health and Welfare (Finland) WP7 : Rights, autonomy and dignity of people with Dementia King Boudewijn Foundation (Belgium) ALCOVE?? 1 REVIEW OF EXISTING INFORMATION European platform 2011 4 RECOMMENDATIONS INFORMATION 2 ANALYSIS OF EXISTING INFORMATION 2013 3 EVIDENCE, NEEDS & PRIORITIES 2012 16
4 fields 1 shared focus WP4 : Cohorts, Epidemiology and registration network National Institute of Health (Italy) Karolina Institut (Sweden) WP5 : Early diagnosis Department of Health (Royaume Uni) Karolina Institut (Sweden) WP6 : Existing practices Dementia care models (Pertubating Behavioural Disorders) National Institute for Health and Welfare (Finland) WP7 : Rights, autonomy and dignity of people with Dementia King Boudewijn Foundation (Belgium) WP4 :AD exposure to psychotropics WP5 :Criteria to improve diagnosis of AD facing with PBD WP6 :Recommendations for care organisation and practices for PBD WP7 :Psychotropics and AD rights (ADW and cognitive assesment) THANK YOU FOR YOUR ATTENTION! European Joint Action ALCOVE ALzheimer COperation and Valuation in Europe ALCOVE@has-sante.fr 17