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Transitie naar (meer) geïntegreerde zorg in België : Synthese
No full text43 p.ill.,Ons huidig gezondheidszorgsysteem is hoofdzakelijk gericht op de aanpak van acute ziekte-episodes met een betaling per prestatie als voornaamste financieringsmechanisme. Dit is niet optimaal om de uitdagingen ten gevolge van de vergrijzing en de toename van chronische ziekten het hoofd te bieden. Het is nodig om te evolueren naar geïntegreerde zorg. We verstaan hieronder een zorgsysteem dat beter afgestemd is op de multi-dimensionele noden van mensen met chronische aandoeningen, dat rekening houdt met de behoeften van mensen gedurende hun hele leven, en dat over de verschillende zorglijnen heen. In België lopen er hierover al verschillende initiatieven, zowel op federaal niveau als op het niveau van de deelstaten. Maar de actoren op het terrein hebben de indruk dat deze nog niet voldoende gecoördineerd worden. Het nieuw Interfederaal Plan voor Geïntegreerde zorg, gepland voor begin 2024, zou hierin een belangrijke stap kunnen zijn.VOORWOORD 1 -- SYNTHESE 2 -- 1. INLEIDING 4 -- 1.1. WAT IS ‘GEÏNTEGREERDE ZORG’? 4 -- 1.2. GEÏNTEGREERDE ZORG IN BELGIË 4 -- 1.3. DOELSTELLINGEN VAN DEZE STUDIE 7 -- 2. DOELSTELLINGEN GEÏNTEGREERDE ZORG VERMELD IN BELGISCHE BELEIDSDOCUMENTEN 10 -- 3. MATURITEIT VAN GEÏNTEGREERDE ZORG IN BELGIË 11 -- 3.1. BEOORDELING VAN DE MATURITEIT VAN GEÏNTEGREERDE ZORG DOOR PROFESSIONALS 11 -- 3.2. BEOORDELING VAN DE ERVARINGEN VAN PATIËNTEN 12 -- 4. ACTIEPUNTEN VOORGESTELD DOOR BELGISCHE PROFESSIONALS 14 -- 4.1. BARRIÈRES EN FACILITATOREN 14 -- 4.2. DRIE FUNDAMENTELE ASSEN 17 -- 5. OP WEG NAAR MEER GEÏNTEGREERDE ZORG! 19 -- 5.1. STRUCTURERING VAN HET BELEIDSKADER 19 -- 5.2. DEFINIËREN TERRITORIALE AANPAK 20 -- 5.2.1. De omvang van het gebied/territorium (of de gebieden/territoria) bepalen 20 -- 5.2.2. Integratie van professionals en versterking van de eerstelijnszorg 21 -- 5.2.3. Organisatie van het gegevensbeheer naar een populatiegerichte benadering 22 -- 5.3. HERZIENING VAN HET FINANCIERINGSMODEL 23 -- 5.3.1. Naar gemengde financieringsmodellen 23 -- 5.3.2. Een geleidelijke uitrol 24 -- 5.3.3. Versterking van de eerstelijnszorg 25 -- 5.3.4. Een initiële investering om te beginnen 25 -- 6. CONCLUSIE 26 -- AANBEVELINGEN 2
Identifying patient needs : methodological approach and application – Supplement
No full text210 p.ill.
Maturity of Integrated care in Belgium : Supplement
No full text135 p.ill.,1. APPENDIX: TERRITORIAL UNIT FOR ANALYSIS PURPOSES 6 -- 2. APPENDIX: MATURITY OF INTEGRATED CARE IN BELGIUM 7 -- 2.1. PROFESSIONAL’S ASSESSMENT OF INTEGRATED CARE 7 -- 2.1.1. Dutch survey 7 -- 2.1.2. French version of professional questionnaire available upon request 20 -- 2.1.3. Professional’s profiles 34 -- 2.1.4. Results of descriptive analysis by respondent’s professional category and level 38 -- 2.1.5. Scirocco spider diagrams per region 62 -- 2.2. ASSESSMENT OF MATURITY OF INTEGRATED CARE BY THE PATIENTS 63 -- 2.2.1. EuroQol Licence agreement for the EQ-5D-5L 63 -- 2.2.2. French patient questionnaire 67 -- 2.2.3. Dutch version of the patient questionnaire 71 -- 2.2.4. German version of the patient questionnaire 76 -- 2.2.5. Recruitment targets and response per geographical region 81 -- 2.2.6. Detailed list of participating recruiting organisations 82 -- 2.2.7. EQ – 5D -5L profiles 84 -- 2.2.8. EQ-5D-5L dimensions 86 -- 2.2.9. PACIC models 87 -- 3. APPENDIX: PROVIDER PAYMENT REFORMS – NARRATIVE LITERATURE REVIEW 89 -- 3.1. TYPES OF PAYMENT MECHANISMS 89 -- 3.2. PAY-FOR-PERFORMANCE (P4P) 91 -- 3.3. POPULATION-BASED PAYMENTS (INCLUDING ACCOUNTABLE CARE ORGANISATIONS (ACO)) 92 -- 3.4. BUNDLED PAYMENTS 99 -- 3.5. REFERENCE LIST OF THE LITERATURE REVIEW 102 -- 4. APPENDIX – TRAJECTORY OF CHANGE 107 -- 4.1. DUTCH VERSION OF THE TRAJECTORY OF CHANGE 107 -- 4.2. FRENCH VERSION OF THE TRAJECTORY OF CHANGE 116 -- 4.3. RÉFÉRENCES 125 -- 4.4. REFERENCES FOR THE TRAJECTORY OF CHANGE 126 -- 5. APPENDIX: SCRIPT OF DISCUSSION GROUPS AND TEMPLATE OF DATA REPORTING 12
Assessment and support of decisional capacity in persons with dementia or mental health problems
No full text329 p.ill.,1 INTRODUCTION 13 -- 2 SCOPE OF THE STUDY 15 -- 3 RESEARCH QUESTIONS 17 -- 3.1 RESEARCH QUESTION 1: WHAT ARE THE DIFFERENT APPROACHES TOWARDS DECISIONAL CAPACITY, ITS ASSESSMENT AND SUPPORT? 17 -- 3.2 RESEARCH QUESTION 2: HOW DOES BELGIAN LEGISLATION DEAL WITH DECISIONAL CAPACITY AND ITS ASSESSMENT AND SUPPORT? 17 -- 3.3 RESEARCH QUESTION 3: WHAT ARE THE NEEDS OF (HEALTH)CARE PROFESSIONALS (IN THE DOMAIN OF DEMENTIA OR MENTAL HEALTH PROBLEMS) IN THE ASSESSMENT AND SUPPORT OF DECISIONAL CAPACITY? 18 -- 3.4 RESEARCH QUESTION 4: WHAT ARE THE NEEDS OF THE PERSONS WITH MENTAL HEALTH PROBLEMS OR DEMENTIA IN THE ASSESSMENT AND SUPPORT OF DECISIONAL CAPACITY? 18 -- 4 METHODOLOGY 18 -- 5 DECISIONAL CAPACITY IN SCIENTIFIC LITERATURE 19 -- 5.1 OBJECTIVE 19 -- 5.2 METHODOLOGY 19 -- 5.2.1 Search strategy 19 -- 5.2.2 Selection criteria for in- or exclusion 19 -- 5.2.3 Data to retrieve / analysis 21 -- 5.3 RESULTS 22 -- 5.3.1 Description of the included articles. 22 -- 5.3.2 Presentation of the findings 22 -- 5.4 PART 1 - TERMINOLOGY 22 -- 5.4.1 Decision-making : a complex phenomenon 22 -- 5.4.2 Decision-making in the medical context 23 -- 5.4.3 Different wordings and four elements 23 -- 5.4.4 Decisional capacity: decision and time specific 30 -- 5.5 PART 2 - PATHOLOGIES AS SOURCE OF DECISIONAL CAPACITY IMPAIRMENT 32 -- 5.5.1 Dementia 33 -- 5.5.2 Brain tumors and other neurological cancers 33 -- 5.5.3 Schizophrenia spectrum and other psychotic disorders 34 -- 5.5.4 Bipolar and related disorders 35 -- 5.5.5 Depression 35 -- 5.5.6 Autism spectrum disorders 36 -- 5.6 PART 3 - ASSESSING DECISIONAL CAPACITY 37 -- 5.6.1 When is a formal assessment needed? 37 -- 5.6.2 How can an assessment be performed? 41 -- 5.6.3 Who should be designed to be assessor? 51 -- 5.6.4 Which barriers are linked to this assessment? 52 -- 5.6.5 Which facilitators are linked to this assessment? 57 -- 5.6.6 Which recommendations have already been formulated regarding decisional capacity assessment? 65 -- 5.7 PART 4 – IMPACT OF DECISIONAL INCAPACITY: AN ETHICAL QUESTION 69 -- 5.7.1 Discrimination and preconceptions 70 -- 5.7.2 Autonomy versus Paternalism 71 -- 5.7.3 Strategies for improving or maintaining the “decisional capacity” 72 -- 5.8 PART 5 – SUPPORTED DECISION-MAKING PATHWAY 73 -- 5.8.1 Concept 74 -- 5.8.2 When has a supported decision-making pathway to be proposed ? 74 -- 5.8.3 How can a supported decision-making pathway be organized? 75 -- 5.8.4 Who has to be involved in a supported decision-making pathway? 78 -- 5.8.5 Which benefits are described with a supported decision-making pathway? 79 -- 5.8.6 Which barriers are linked to the supported decision-making pathway? 79 -- 5.8.7 Which facilitators are linked to the supported decision-making pathway 82 -- 5.8.8 Which recommendations have already been formulated regarding supported decisionmaking pathway? 84 -- 5.9 PART 6 – ADVANCE DECISION 89 -- 5.9.1 Concepts 89 -- 5.9.2 When should advance decision be proposed? 90 -- 5.9.3 How is advance decision elaborated? 92 -- 5.9.4 Who has to be involved in advance decision pathway? 93 -- 5.9.5 Which benefits are described with advance decision? 95 -- 5.9.6 Which barriers are linked to the advance decision pathway? 97 -- 5.9.7 Which facilitators are linked to the advance decision pathway? 103 -- 5.9.8 Which recommendations have already been formulated regarding advance decision? 107 -- 5.10 PART 7 – SURROGATE DECISION-MAKING PATHWAY: SUBSTITUTED JUDGEMENT AND BEST-INTEREST APPROACH 111 -- 5.10.1 Concepts 111 -- 5.10.2 When a surrogate decision-making pathway should be proposed? 112 -- 5.10.3 How is a surrogate decision-making pathway organized? 113 -- 5.10.4 Who has to be involved in the surrogate decision-making pathway? 116 -- 5.10.5 Which barriers are linked to the surrogate decision-making pathway?. 117 -- 5.10.6 Which facilitators are linked to the surrogate decision-making pathway? 122 -- 5.10.7 Which recommendations have already been formulated regarding surrogate decisionmaking pathway. 125 -- 5.11 LIMITATIONS OF THIS LITERATURE REVIEW 129 -- 5.12 FUTURE RESEARCH 130 -- 5.12.1 Assessment 130 -- 5.12.2 Supported decision-making 131 -- 5.12.3 Advance decision 131 -- 5.12.4 Surrogate decision-making 131 -- 5.12.5 HCPs Training and support 131 -- 6 DECISIONAL CAPACITY AND THE LAW 132 -- 6.1 OBJECTIVE 132 -- 6.2 METHODOLOGY 132 -- 6.3 PART 1 - DECISIONAL CAPACITY: TERMINOLOGY, INTERPRETATION AND ASSESSMENT 133 -- 6.3.1 Terminology 133 -- 6.3.2 The capabilities required to have decisional capacity 134 -- 6.3.3 The assessment of decisional capacity 138 -- 6.4 PART 2 - CONSEQUENCES OF DECISIONAL INCAPACITY: SUBSTITUTE DECISIONMAKING IN THE EXERCISE OF PATIENT’S RIGHTS 149 -- 6.4.1 Who is the substitute decision-maker in charge of exercising patient’s rights? 150 -- 6.4.2 How should a substitute decision-maker decide when exercising patient’s rights? 155 -- 6.4.3 The value of action through which an incapacitated patient appears to oppose treatment. 156 -- 6.4.4 Support in case of reduced decisional capacity? 157 -- 6.5 PART 3 –DECISIONAL CAPACITY IN SPECIFIC LEGISLATION: THE EXAMPLES OF EUTHANASIA, ORGAN DONATION AND MEDICAL EXPERIMENTS 160 -- 6.5.1 Decisional capacity and euthanasia 161 -- 6.5.2 Decisional capacity and experiments on human beings 166 -- 6.5.3 Decisional capacity and organ donation 168 -- 6.6 PART 4 - ADVANCE CARE PLANNING 171 -- 6.6.1 Types of written advance directives 172 -- 6.6.2 Crisis planning for patients with a psychiatric disorder 176 -- 6.7 PART 5 - ADMISSION OF A CARE USER IN A RESIDENTIAL CARE SETTING 178 -- 6.7.1 Admission to a residential care centre (or home replacement environment) 178 -- 6.7.2 Admission in a psychiatric facility 179 -- 6.7.3 Decisional incapacity and day-to-day decisions in a residential care context 183 -- 6.8 PART 6 - THE ROLE OF THE UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES 185 -- 6.9 LIMITATIONS 194 -- 7 PROFESSIONALS’ PERCEPTIONS RELATED TO DECISIONAL CAPACITY 195 -- 7.1 OBJECTIVE 195 -- 7.2 METHODOLOGY 195 -- 7.2.1 Participants 195 -- 7.2.2 Data collection 196 -- 7.2.3 Data analysis 198 -- 7.3 PART 1 -TERMINOLOGY USED BY PROFESSIONALS AROUND DECISIONAL CAPACITY 199 -- 7.3.1 Many synonyms/terms are used 199 -- 7.4 PART 2 - CONTENT AND CHARACTERISTICS OF DECISIONAL CAPACITY 201 -- 7.4.1 Composing elements of decisional capacity 201 -- 7.4.2 Decisional capacity, a ‘relative’ concept 202 -- 7.4.3 Decisional capacity is task/context-specific 202 -- 7.5 PART 3 - ASSESSMENT OF DECISIONAL CAPACITY: CHARACTERISTICS, BARRIERS AND FACILITATORS, METHODS AND CONTEXT 203 -- 7.5.1 Focus on the decision-making process, not on the ultimate decision 203 -- 7.5.2 Standards and modalities for assessment depend on the severity of the pathology and the consequences of the decision for the patient’s health 207 -- 7.5.3 Methods for assessing the decisional capacity 207 -- 7.5.4 When (explicitly) evaluating decisional capacity? 210 -- 7.5.5 Particularities to certain types of mental health problems 210 -- 7.5.6 The impact of the personality and the social context of the patient 211 -- 7.5.7 The (possible) balance of power between the patient and physicians 212 -- 7.5.8 Place of the changing identity/values/preferences 212 -- 7.6 PART 4 - SUPPORTING THE PATIENTS IN THEIR DECISIONAL CAPACITY 214 -- 7.7 PART 5 - NEED FOR GUIDANCE FOR PROFESSIONALS 215 -- 7.8 PART 6 - NEED FOR FEEDBACK TO THE PATIENT 216 -- 7.9 PART 7 - ADVANCE CARE PLANNING 217 -- 7.9.1 Opportunities and limits of advance care planning 217 -- 7.9.2 When initiating advance care planning? 218 -- 7.9.3 Who should initiate/be involved in the process? 219 -- 7.10 PART 8 - CRISIS PLANNING FOR PERSONS WITH PSYCHIATRIC PROBLEMS 221 -- 7.11 LIMITATIONS 221 -- 8 PATIENTS’ PERSPECTIVES ON DECISIONAL CAPACITY 222 -- 8.1 OBJECTIVE 222 -- 8.2 METHODOLOGY 222 -- 8.2.2 Data analysis 225 -- 8.2.3 Ethical aspects 225 -- 8.3 RESULTS 226 -- 8.3.1 Presentation of the participants 226 -- 8.3.2 Presentation of the findings 227 -- 8.4 PART 1 - DECISIONAL CAPACITY AND DECISIONS ABOUT HEALTH CARE 228 -- 8.4.1 Definition/characteristics of the decisional capacity 228 -- 8.4.2 Factors influencing decisional capacity related to health care 229 -- 8.4.3 Patient reported experiences of exerting their decisional capacity 239 -- 8.5 PART 2 - EVALUATION OF THE (IN)CAPACITY 245 -- 8.5.1 Methods to assess the capacity of the patients 245 -- 8.5.2 When should the decisional capacity be assessed? 246 -- 8.5.3 Actors of the evaluation 248 -- 8.5.4 Communication of the results of the evaluation 249 -- 8.5.5 Consequences of the evaluation 249 -- 8.6 PART 3 - SOLUTIONS TO RESTORE AND MAINTAIN DECISIONAL CAPACITY 250 -- 8.6.1 At patient level 250 -- 8.6.2 At institutional level 255 -- 8.6.3 At political level 256 -- 8.7 LIMITATIONS OF THE ANALYSIS AND POTENTIAL BIAS 258 -- 9 DISCUSSION AND CONCLUSIONS 260 -- 9.1 NO CLARITY IN TERMINOLOGY AND DEFINITION OF DECISIONAL CAPACITY 260 -- 9.2 SHIFT FROM SUBSTITUTED-DECISION MAKING TO SUPPORTED-DECISION MAKING? 262 -- 9.3 TOWARDS A MORE PROMINENT ROLE FOR SUPPORTED DECISION-MAKING IN BELGIUM? 264 -- 9.4 ELEMENTS TO STRENGTHEN SUPPORTED DECISION – MAKING 265 -- 9.4.1 Foresee more (types of) support 265 -- 9.4.2 Provide training for patients and support persons 267 -- 9.4.3 Provide training for professionals 268 -- 9.4.4 Manage medical barriers for decisional capacity 268 -- 9.4.5 Facilitate advance care planning 269 -- 9.5 ELEMENTS TO FACILITATE DECISIONAL CAPACITY ASSESSMENTS 272 -- 9.5.1 Guidance on how to deal with decisional capacity (assessments) for healthcare professionals 273 -- 9.5.2 Provide support in the assessment process 275 -- 9.5.3 Provide training, intervision and supervision for professionals 275 -- 9.6 ORGANISING SUBSTITUTE DECISION-MAKING OF PATIENTS IN A COHERENT WAY 276 -- 9.7 FORESEE GUARANTEES RELATED TO COERCION AND OPPOSITION OF PATIENTS 277 -- 9.8 OVERALL NEED FOR SUPPORT MEASURES EMBEDDED IN AN ORGANIZATIONAL AND LEGAL FRAMEWORK TO OPTIMIZE THE PROCESS OF ASSESSING, SUPPORTING AND RESTORING DECISIONAL CAPACITY 278 -- APPENDICES 279 -- APPENDIX 1. LITERATURE SEARCH STRATEGIES 279 -- APPENDIX 1.1. SEARCH STRATEGY 279 -- APPENDIX 1.2. REASONS OF EXCLUSION OF 13 ARTICLES 281 -- APPENDIX 1.3. SUCCINCT DESCRIPTION OF THE 76 INCLUDED ARTICLES 283 -- APPENDIX 1.4. INSTRUMENTS FOR DECISION-MAKING ASSESSMENT. 294 -- APPENDIX 2. STATEMENTS AND CASES OF THE PROFESSIONAL FORUM 300 -- APPENDIX 3. INTERVIEW GUIDE 308 -- APPENDIX 3.1. INTRODUCTION 308 -- APPENDIX 3.2. QUESTIONNAIRE IN FRENCH 309 -- APPENDIX 3.3. TOPIC GUIDE IN DUTCH 315 -- REFERENCES 32
Infant- and family-centred developmental care for preterm newborns in neonatal care
No full text202 p.ill.1 INTRODUCTION AND BACKGROUND.12 -- 1.1 IMPORTANCE OF ATTACHMENT BUILDING BETWEEN PARENTS AND NEWBORN 12 -- 1.2 WHAT DO INTERNATIONAL CHARTERS AND STANDARDS RECOMMEND? 13 -- 1.2.1 Convention on the Rights of the Child 13 -- 1.2.2 European Association for Children in Hospital .13 -- 1.2.3 European Standards of Care for Newborn Health 14 -- 1.3 DEFINITIONS AND TERMINOLOGY 16 -- 1.3.1 Definition of infant- and family-centred developmental care (IFCDC) 16 -- 1.3.2 IFCDC delivery: related concepts and models .17 -- 1.4 RESEARCH QUESTIONS AND METHODS 22 -- 1.5 SCOPE .23 -- 2 ORGANISATION OF NEONATAL CARE IN BELGIUM 23 -- 2.1 LOCAL NEONATAL CARE FUNCTION (N* FUNCTION) AND N* WARD 24 -- 2.1.1 Definition 24 -- 2.1.2 Licensing standards regarding staffing .24 -- 2.1.3 Architectural and functional licensing standards 25 -- 2.1.4 Current supply 25 -- 2.2 NEONATAL INTENSIVE CARE SERVICE (NIC SERVICE) 26 -- 2.2.1 Definition 26 -- 2.2.2 Licensing standards regarding staffing .26 -- 2.2.3 Architectural and functional licensing standards 26 -- 2.2.4 Programming standards and minimum activity standards 27 -- 2.2.5 Current supply 27 -- 2.3 REGIONAL PERINATAL CARE FUNCTION (P* FUNCTION) 27 -- 2.3.1 Definition 27 -- 2.3.1 Licensing standards regarding staffing .27 -- 2.3.2 Architectural and functional licensing standards 28 -- 2.3.3 Current supply 28 -- 2.4 SUMMARY OF THE CURRENT ORGANISATION OF NEONATAL CARE .29 -- 2.5 REVENUE SOURCES OF HOSPITALS .30 -- 2.6 MEASURES FOR PARENTS 30 -- 2.6.1 Maternity leave 30 -- 2.6.2 Paternity/coparent leave 31 -- 2.6.3 Medical assistance leave .32 -- 2.6.4 Rooming-in 32 -- 3 PROFILE OF HOSPITALISED PRETERM NEWBORNS .33 -- 3.1 KEY POINTS .33 -- 3.2 INTRODUCTION .33 -- 3.3 METHODS 34 -- 3.3.1 Administrative databases .34 -- 3.4 RESULTS DATA ANALYSIS .34 -- 3.5 IMPACT OF COVID-19 45 -- 4 INTERVENTIONS TO PROVIDE NEONATAL INFANT- AND FAMILY-CENTRED DEVELOPMENTAL CARE: A SYSTEMATIC REVIEW IN HIGH INCOME COUNTRIES 46 -- 4.1 KEY POINTS .46 -- 4.2 INTRODUCTION .46 -- 4.3 METHODS 47 -- 4.4 RESULTS 48 -- 4.4.1 Characteristics of the included trials 50 -- 4.4.2 Interventions 59 -- 4.5 CONCLUSION 81 -- 5 PARENTS’ PERSPECTIVES ON FACILITATORS AND BARRIERS OF IFCDC 82 -- 5.1 INTRODUCTION .82 -- 5.2 METHODS 82 -- 5.2.1 Design 82 -- 5.2.2 Sampling and selection .82 -- 5.2.3 Data collection tools 83 -- 5.2.4 Data analysis 84 -- 5.2.5 Ethical committee approval .84 -- 5.3 RESULTS 84 -- 5.3.1 Characteristics of the participants 84 -- 5.3.2 Advantages of anticipating preterm birth .87 -- 5.3.3 Difficulties for mothers of a preterm baby during maternity stay .89 -- 5.3.4 Difficulties for fathers of a preterm baby 91 -- 5.3.5 Informational, emotional and instrumental support help parents cope with the distress of having a preterm newborn 93 -- 5.3.6 Partnership between parents and neonatal staff is built on their availability and support 96 -- 5.3.7 Active involvement is much appreciated but not yet perfect 97 -- 5.3.8 Parents suffered the most from being separated from their child .101 -- 5.3.9 Challenges and opportunities regarding (breast)feeding and skin-to-skin care 109 -- 5.3.10 Improvements suggested by parents 118 -- 5.3.11 Conclusion and discussion 122 -- 6 HEALTHCARE PROFESSIONALS’ EVALUATION OF IFCDC .124 -- 6.1 KEY POINTS 124 -- 6.2 METHODS 125 -- 6.2.1 Online focus groups .125 -- 6.2.2 Sampling and selection 127 -- 6.2.3 Data collection and analysis 128 -- 6.3 RESULTS .128 -- 6.3.1 The importance of infant- and family-centred developmental care (IFCDC) 128 -- 6.3.2 Core principles of IFCDC 129 -- 6.3.3 Description of IFCDC in practice 132 -- 6.3.4 Conditions to put IFCDC successfully in practice .141 -- 6.4 KEY POINTS AND SUGGESTED SOLUTIONS 167 -- 7 IFCDC IMPLEMENTATION IN EUROPEAN BEST PRACTICES .170 -- 7.1 KEY POINTS 170 -- 7.2 METHODS 171 -- 7.3 KAROLINSKA UNIVERSITY HOSPITAL, STOCKHOLM, SWEDEN 171 -- 7.3.1 Neonatal care in Sweden 171 -- 7.3.2 Karolinska University Hospital 172 -- 7.4 CENTRE HOSPITALIER DE VALENCIENNES, VALENCIENNES, FRANCE .175 -- 7.4.1 Neonatal care in France .175 -- 7.4.2 Centre Hospitalier Valenciennes 176 -- 7.5 HOSPITAL 12 DE OCTUBRE, MADRID, SPAIN .179 -- 7.5.1 Neonatal care in Spain 179 -- 7.5.2 Hospital Universitario 12 de Octubre 179 -- 7.6 SOPHIA’S CHILDREN’S HOSPITAL, ERASMUS MEDICAL CENTRE, ROTTERDAM, NETHERLANDS 182 -- 7.6.1 Neonatal care in the Netherlands .182 -- 7.6.2 Sophia’s Children’s Hospital 182 -- 7.7 DISCUSSION AND CONCLUSION 18
Les soins de développement centrés sur l’enfant prématuré et sa famille en néonatologie : Synthèse
No full text31 p.ill.Les premiers jours de vie sont cruciaux pour la création du lien d’attachement entre un nouveau-né et ses parents. Une séparation juste après la naissance peut perturber la constitution de ce lien profond et avoir des conséquences sur le développement ultérieur de l'enfant. Or il n’est pas rare qu’un nouveau-né – surtout s’il est prématuré – doive être hospitalisé en néonatologie pendant quelques jours ou semaines. Les recherches en psychologie du développement ont été à l’origine des « soins de développement centrés sur l’enfant et sa famille » qui visent à minimiser la séparation entre un nouveau-né et ses parents et à favoriser les interactions entre eux en toutes circonstances. Ces soins sont déjà proposés dans de nombreux hôpitaux belges, mais pas dans tous. Le Centre fédéral d’Expertise des Soins de santé (KCE) publie aujourd’hui un rapport qui analyse les modèles de soins de développement décrits dans la littérature et la manière dont ils pourraient être optimalisés en Belgique.PRÉFACE 1 -- SYNTHÈSE 2 -- 1. POURQUOI CETTE ÉTUDE ? 5 -- 1.1. LE CONCEPT D’ATTACHEMENT 5 -- 1.2. LES SOINS DE DÉVELOPPEMENT CENTRÉS SUR L’ENFANT ET SA FAMILLE : UN CONCEPT MULTI-FACETTES 6 -- 1.3. LES SOINS IFCDC DANS LES TRAITES ET CHARTES INTERNATIONAUX 8 -- 1.4. LES INITIATIVES SOUTENUES PAR LES POUVOIRS PUBLICS EN BELGIQUE 9 -- 1.4.1. L'Initiative Hôpital Ami des Bébés (IHAB) 9 -- 1.4.2. NIDCAP, FINE et CLE 9 -- 1.5. QUESTIONS DE RECHERCHE 9 -- 2. LES SOINS PÉRINATALS / NÉONATALS EN BELGIQUE 10 -- 2.1. ORGANISATION DES SERVICES DE NEONATOLOGIE 10 -- 2.1.1. Soins néonatals locaux (fonction N*) et service N* 10 -- 2.1.2. Soins de néonatologie intensive 10 -- 2.1.3. Fonction régionale de soins périnatals 11 -- 2.2. CARACTÉRISTIQUES DES NOUVEAU-NÉS PRÉMATURÉS HOSPITALISÉS EN UNITÉ DE SOINS NÉONATALS 11 -- 3. REVUE DE LITTÉRATURE SUR LES SOINS IFCDC 13 -- 3.1. MODELES IDENTIFIES POUR LA MISE EN OEUVRE DES SOINS IFCDC 13 -- 3.2. RÉSULTATS RELATIFS À L’IMPACT DES MODÈLES ÉTUDIÉS 14 -- 4. FORCES ET FAIBLESSES DES SOINS IFCDC EN BELGIQUE 14 -- 4.1. ARCHITECTURE: UN MANQUE D'ESPACE ET DE CONFORT 15 -- 4.2. PRÉSENCE DES PARENTS ET PARTICIPATION AUX SOINS 16 -- 4.2.1. Un accès illimité assez…limité 16 -- 4.2.2. Créativité dans l’hébergement 16 -- 4.2.3. Combinaison avec la vie quotidienne 17 -- 4.2.4. Allaitement 17 -- 4.3. SOUTIEN AUX PARENTS, GUIDANCE ET ÉDUCATION 18 -- 4.3.1. Soutien émotionnel 18 -- 4.3.2. Soutien logistique et financier 18 -- 4.3.3. Guidance et éducation 19 -- 4.4. TEMPS DISPONIBLE ET FORMATION DU PERSONNEL SOIGNANT 19 -- 4.4.1. Disponibilité et flexibilité du personnel soignant 19 -- 4.4.2. Personnel en nombre (in)suffisant 19 -- 4.4.3. Nécessité de formations 20 -- 4.4.4. Impact du financement hospitalier 21 -- 4.5. RÔLE DE LA TECHNOLOGIE 21 -- 4.6. PRISE DE DÉCISION PARTAGÉE 21 -- 4.7. PÉRIODES DE TRANSITION 22 -- 5. ÉTUDE DE 4 EXEMPLES INTERNATIONAUX DE BONNES PRATIQUES 23 -- 5.1. FACILITATEURS DES SOINS IFCDC IDENTIFIÉS 23 -- 5.2. OBSTACLES IDENTIFIÉS 25 -- 6. PISTES POUR UNE IMPLÉMENTATION ADÉQUATE DES SOINS IFCDC EN BELGIQUE 26 -- 6.1. LA SÉPARATION DU NOUVEAU-NÉ PRÉMATURÉ ET DE SES PARENTS PEUT AVOIR DES CONSÉQUENCES À LONG TERME ET DOIT ÊTRE ÉVITÉE AUTANT QUE POSSIBLE 26 -- 6.2. UNE IMPLÉMENTATION ADÉQUATE DES SOINS IFCDC NE PEUT PAS REPOSER SUR DES INTERVENTIONS ISOLÉES, MAIS NÉCESSITE UN PLAN D'ACTION INTÉGRÉ 26 -- 6.3. LA MISE EN OEUVRE DES SOINS IFCDC NÉCESSITE DES EFFECTIFS SUFFISANTS 27 -- 6.4. INFRASTRUCTURES ET ARCHITECTURES OBSOLÈTES COMPROMETTENT L’IMPLÉMENTATION DES SOINS IFCDC 27 -- 6.5. LES PARENTS DE NOUVEAU-NÉS PRÉMATURÉS DOIVENT POUVOIR COMPTER SUR UN SOUTIEN SUFFISANT PENDANT ET APRÈS L'HOSPITALISATION DE LEUR ENFANT 28 -- 6.6. L’IMPLÉMENTATION DES SOINS IFCDC REQUIERT UNE ATTENTION SUPPLÉMENTAIRE LORS DES MOMENTS DE TRANSFERT 28 -- RECOMMANDATIONS 2
Health system performance assessment : care for people living with chronic conditions
No full text107 p.ill.,PART 1 – CONTEXT AND METHOD 14 -- 1 CONTEXT AND OBJECTIVES 14 -- 1.1 INTRODUCTION 14 -- 1.2 CONCEPTUAL FRAMEWORK 15 -- 1.3 SCOPE AND OBJECTIVE OF THE REPORT 15 -- 1.4 DEFINITION OF THE CHRONIC DISEASES: A PRELIMINARY CRITICAL NOTE 16 -- 1.4.1 Definition criteria 17 -- 1.4.2 Existing lists of chronic diseases 18 -- 1.4.3 Conclusion 19 -- 1.5 WAYS USED TO IDENTIFY CHRONIC PATIENTS IN NATIONAL DATABASES 19 -- 1.6 SPECIFIC MEASURES FOR CHRONICALLY ILL PEOPLE 20 -- 1.6.1 Measures to improve the quality of chronic patients care 20 -- 1.6.2 General description of main financial protection measures 20 -- 1.6.3 A specific status for persons with a chronic illness 21 -- 1.6.4 Discussion 30 -- 2 METHODS AND DATA 30 -- 2.1 SELECTION OF INDICATORS 30 -- 2.1.1 Preselection process 30 -- 2.1.2 Final selection of indicators 33 -- 2.2 DATA SOURCES 36 -- 2.3 OUTLINE OF REPORT 37 -- PART 2 – RESULTS 40 -- 3 CONTEXTUAL INDICATORS 40 -- 3.1 PROPORTION OF PEOPLE WITH THE RIZIV – INAMI CHRONIC ILLNESS STATUS ACCORDING TO THEIR OFFICIAL HEALTH EXPENDITURE 45 -- 3.2 PROPORTION OF PEOPLE REPORTING A CHRONIC DISEASE 46 -- 3.3 PROPORTION OF PEOPLE REPORTING MULTIMORBID STATE IN THE LAST 12 MONTHS 48 -- 3.4 SELF-PERCEIVED QUALITY OF LIFE 49 -- 3.5 CONCLUSION 50 -- 4 QUALITY OF CARE 51 -- 4.1 EFFECTIVENESS OF CARE 51 -- 4.1.1 Effectiveness of primary care for chronic patients with asthma, diabetes or COPD 51 -- 4.1.2 Effectiveness of care for chronic patients with tuberculosis 55 -- 4.1.3 Conclusion 56 -- 4.2 APPROPRIATENESS OF CARE 56 -- 4.2.1 Appropriateness of follow-up for patients with diabetes 57 -- 4.2.2 Conclusion 59 -- 4.3 CONTINUITY OF CARE 60 -- 4.3.1 Assessing informational continuity in general practice, with a distinction between persons with and without chronic illness status 61 -- 4.3.2 Assessing informational continuity in medication, with a distinction between persons with and without chronic illness status 65 -- 4.3.3 Assessing management continuity between hospital and general practice, with a distinction between persons with and without chronic illness status 66 -- 4.3.4 Assessing coordination in ambulatory care for chronic patients 67 -- 4.3.5 Conclusion 69 -- 4.4 PATIENT CENTRED CARE 70 -- 4.4.1 Physician spending enough time with patients during the consultation 71 -- 4.4.2 The doctor gives an opportunity to the patients to ask questions or raise concerns about recommended treatment 72 -- 4.4.3 The doctor involves the patient as much as he wants in decisions about care and treatment 72 -- 4.4.4 Conclusion 72 -- 5 EQUITY AND ACCESSIBILITY OF CARE 73 -- 5.1 FINANCIAL ACCESSIBILITY AND EQUITY IN HEALTHCARE FINANCING 73 -- 5.2 UNMET NEEDS FOR MEDICAL EXAMINATION DUE TO FINANCIAL REASONS 75 -- 5.3 OUT-OF-POCKET PAYMENTS AS A SHARE OF TOTAL HEALTHCARE EXPENSES 76 -- 5.4 CATASTROPHIC AND IMPOVERISHING OR FURTHER IMPOVERISHING OOPS 78 -- 5.5 CONCLUSION 81 -- 6 EFFICIENCY 82 -- 6.1 LOW-CARE DIALYSIS 82 -- 6.2 CONCLUSION 84 -- 7 DOMAINE OF PERFORMANCE 84 -- 7.1 PREVENTION 84 -- 7.1.1 Influenza vaccination among the elderly 87 -- 7.1.2 Breast cancer screening 88 -- 7.1.3 Regular contact with dentists 88 -- 7.1.4 Conclusion 89 -- 7.2 OTHER DOMAINS 89 -- 8 DISCUSSION AND CONCLUSION 90 -- 8.1 STRENGTHS AND WEAKNESSES OF THE BELGIAN HEALTH SYSTEM FOR THE CARE OF CHRONIC PATIENTS 90 -- 8.2 LIMITATIONS 92 -- 8.3 CONCLUSION 94 -- 9 RECOMMENDATIONS 95 -- APPENDICES 97 -- APPENDIX 1. SEARCH STRATEGIES HSPA 97 -- APPENDIX 2. INDICATORS NOT RETAINED 97 -- REFERENCES 9
The right to be forgotten in breast cancer : new propositions: supplement
No full text175 p.Ill.,1. HISTORY OF THE RIGHT TO BE FORGOTTEN LEGISLATION IN BELGIUM 13 -- 2. REFERENCE TABLES OF “THE RIGHT TO BE FORGOTTEN” LEGISLATION IN BELGIUM (ROYAL DECREE 26 MAY 2019, PUBLISHED ON 14 JUNE 2019) 19 -- 3. CONSULTED STAKEHOLDERS AND EXPERTS 32 -- 4. EXPLORATORY ANALYSIS: ALL-CAUSE DEATHS, EXCESS DEATHS AND INTERVALSPECIFIC RELATIVE SURVIVAL 33 -- 5. POPULATION-BASED REGISTRY STUDY: SAMPLE CHARACTERISTICS 62 -- 5.1. IN SITU-TUMOURS 62 -- 5.2. EARLY-STAGE INVASIVE BREAST TUMOURS 63 -- 6. POPULATION-BASED REGISTRY STUDY: EXAMPLE OF POOR CORRESPONDENCE BETWEEN PREDICTED NET SURVIVAL AND POHAR PERME 67 -- 7. POPULATION-BASED REGISTRY STUDY: RESULTS OF THE PREDICTED EXCESS HAZARD, NET SURVIVAL AND CONDITONAL SURVIVAL FOR IN SITU TUMOURS 69 -- 7.1. TIS N0 M0, 2007-2018 69 -- 7.1.1. Tis N0 M0, Overall result full cohort 69 -- 7.1.2. Tis N0 M0, stratified by age at diagnosis 71 -- 8. POPULATION-BASED REGISTRY STUDY: RESULTS OF THE PREDICTED EXCESS HAZARD, NET SURVIVAL AND CONDITONAL NET SURVIVAL FOR EARLY-STAGE INVASIVE TUMOURS 73 -- 8.1. T0-1N1MIM0, 2007-2018 73 -- 8.1.1. T0-1N1miM0, Overall result cohort <60 year at diagnosis 73 -- 8.1.2. T0-1N1miM0, by age at diagnosis 74 -- 8.1.3. T0-1N1miM0, <60, stratified by incidence period 79 -- 8.1.4. T0-1N1miM0, stratified by more age groups 79 -- 8.1.5. T0-1N1miM0, <60, stratified by histology 79 -- 8.2. T1-1MIN0M0, 2007-2018 80 -- 8.2.1. T1-1miN0M0, Overall result cohort <60 year at diagnosis 80 -- 8.2.2. T1-1miN0M0, by age at diagnosis 81 -- 8.2.3. T1-1miN0M0, <60, stratified by incidence period 86 -- 8.2.4. T1-1miN0M0, stratified by more age groups 89 -- 8.2.5. T1-1miN0M0, <60, stratified by histology 93 -- 8.3. T1-1MIN1M0, 2007-2018 96 -- 8.3.1. T1-1miN1M0, Overall result cohort <70 year at diagnosis 96 -- 8.3.2. T1-1miN1M0, by age at diagnosis 97 -- 8.3.3. T1-1miN1M0, <70, stratified by incidence period 102 -- 8.3.4. T1-1miN1M0, stratified by more age groups 105 -- 8.3.5. T1-1miN1M0, <70, stratified by histology 108 -- 8.4. T2N0M0, 2007-2018 111 -- 8.4.1. T2N0M0, Overall result cohort <70 year at diagnosis 111 -- 8.4.2. T2N0M0, by age at diagnosis 113 -- 8.4.3. T2N0M0, <70, stratified by incidence period 118 -- 8.4.4. T2N0M0, stratified by more age groups 121 -- 8.4.5. T2N0M0, <70, stratified by histology 125 -- 8.5. T2N1M0, 2007-2018 128 -- 8.5.1. T2N1M0, Overall result full cohort 128 -- 8.5.2. T2N1M0, by age at diagnosis 130 -- 8.5.3. T2N1M0, stratified by incidence period 136 -- 8.5.4. T2N1M0, stratified by more age groups 139 -- 8.5.5. T2N1M0, stratified by histology 143 -- 8.6. T3N0M0, 2007-2018 146 -- 8.6.1. T3N0M0, Overall result cohort <70 year at diagnosis 146 -- 8.6.2. T3N0M0, by age at diagnosis 148 -- 8.6.3. T3N0M0, <70, stratified by incidence period 153 -- 8.6.4. T3N0M0, stratified by more age groups 156 -- 8.6.5. T3N0M0, <70, stratified by histology 160 -- 9. POPULATION-BASED REGISTRY STUDY: RESULTS FOR INVASIVE TUMOURS -- STRATIFIED BY SEX (MALE BREAST CANCER) 163 -- 9.1. T0-1N1MIM0, 2007-2018, <60 163 -- 9.2. T1-1MIN0M0, 2007-2018, <60 163 -- 9.3. T1-1MIN1M0, 2007-2018, <70 165 -- 9.4. T2N0M0, 2007-2018, <70 167 -- 9.5. T2N1M0, 2007-2018 169 -- 9.6. T3N0M0, 2007-2018, <70 170 -- 10. LITERATURE REVIEW 171 -- 10.1. SEARCH STRATEGY 171 -- 10.2. FLOWCHART: STUDY SELECTION PROCESS 173 -- 11. GLOSSARY 174 -
Use and organisation of ECMO in Belgium
No full text157 p.ill.,SCIENTIFIC REPORT 13 -- 1 INTRODUCTION AND SCOPE .13 -- 1.1 BASIC DESCRIPTION OF ECMO .13 -- 1.2 HISTORY 14 -- 1.3 ECMO TECHNIQUES 14 -- 1.3.1 Configurations of ECMO 14 -- 1.3.2 Indications of ECMO 17 -- 1.3.3 Complications of ECMO .18 -- 1.4 REPORTED OUTCOMES AND REGISTRIES 18 -- 1.4.1 Background 18 -- 1.4.2 The ELSO registry 18 -- 1.5 SCOPE OF THIS REPORT 20 -- 2 USE OF ECMO IN BELGIUM: PERIOD 2016-2019 21 -- 2.1 DATA SOURCE 21 -- 2.2 METHODS 22 -- 2.3 RESULTS .24 -- 2.3.1 Distribution of overall patient population (n=2543) 26 -- 2.3.2 Geographic distribution of adult population according to ECMO type (n=1801) .29 -- 2.3.3 Demographics 31 -- 2.3.4 Clinical information .34 -- 2.3.5 Intervention billing: timing (n=1801) .36 -- 2.3.6 Blood products consumption (n=1801) 37 -- 2.3.7 Survival analysis (n=1319) .37 -- 2.4 LIMITATIONS .40 -- 3 USE OF ECMO IN BELGIUM DURING SARS-COV-2 PANDEMIC: PERIOD 2020-2022 .41 -- 3.1 DATA SOURCE 41 -- 3.1.1 Clinical Hospital Surveillance (CHS) 41 -- 3.2 METHODS 41 -- 3.3 RESULTS .43 -- 3.3.1 Number of patients receiving ECMO .43 -- 3.3.2 Patient and admission characteristics 43 -- 3.3.3 Clinical parameters 54 -- 3.3.4 Ventilation 58 -- 3.3.5 Treatment .62 -- 3.4 LIMITATIONS .63 -- 4 REVIEW OF LITERATURE: EFFECTIVENESS AND SAFETY OF ECMO .64 -- 4.1 INTRODUCTION 64 -- 4.2 METHODS 64 -- 4.3 RESULTS .66 -- 4.3.1 Veno-venous ECMO 66 -- 4.3.2 Veno-arterial ECMO for cardiac arrest (extracorporeal cardiopulmonary resuscitation) and -- cardiogenic shock 72 -- 4.3.3 More recent evidence .84 -- 4.4 DISCUSSION .84 -- 4.4.1 Main findings 84 -- 4.4.2 Limitations of available evidence .85 -- 4.4.3 Limitation of this review 86 -- 4.4.4 Perspectives and ongoing studies .86 -- 5 REVIEW OF LITERATURE: ORGANIZATION OF ECMO SERVICES 89 -- 5.1 INTRODUCTION 89 -- 5.2 RESEARCH QUESTION AND METHODS 89 -- 5.3 RESULTS .90 -- 5.3.1 Evidence retrieved from HTA agencies .90 -- 5.3.2 Evidence retrieved from literature 91 -- 5.3.3 International guidelines and experts position .97 -- 5.4 DISCUSSION AND MAIN FINDINGS 100 -- 6 PATIENT PERSPECTIVES AND ETHICAL ASPECTS WITH ECMO USE .102 -- 6.1 INTRODUCTION 102 -- 6.2 METHODS 102 -- 6.3 RESULTS .102 -- 7 INTERNATIONAL COMPARISON ON THE USE AND THE FUNDING OF ECMO 104 -- 7.1 INTRODUCTION 104 -- 7.2 METHODS 105 -- 7.3 RESULTS .106 -- 7.3.1 Countries with a centralisation of ECMO services .106 -- 7.3.2 Countries without centralised ECMO services .110 -- 7.4 DISCUSSION .119 -- 8 SYSTEMATIC LITERATURE REVIEW OF COSTING STUDIES .120 -- 8.1 INTRODUCTION 120 -- 8.2 METHODS 120 -- 8.2.1 Search strategy 120 -- 8.2.2 Selection procedure .120 -- 8.2.3 Selection criteria .120 -- 8.2.4 Results: 121 -- 8.3 OVERVIEW OF COSTING STUDIES ON ECMO 124 -- 8.3.1 Type of cost analysis 125 -- 8.3.2 Perspective 125 -- 8.3.3 Time frame of analyses and discounting .125 -- 8.3.4 Type of ECMO and Population 126 -- 8.3.5 Comparator 126 -- 8.3.6 Cost and outcome inputs .126 -- 8.3.7 Results .127 -- 8.3.8 Discussion and limitations 131 -- 8.4 KEY POINTS 133 -- 9 SURVEY OF BELGIAN HOSPITALS ON COSTS OF ECMO 133 -- 9.1 INTRODUCTION 133 -- 9.2 METHODS 133 -- 9.3 RESULTS .134 -- 9.3.1 Overall number of ECMO machines and patients on ECMO 2019-2021 134 -- 9.3.2 Costs of ECMO 135 -- 9.4 OVERALL COSTS PER ECMO TREATMENT 138 -- 9.5 SENSITIVITY ANALYSIS .139 -- 9.6 LIMITATIONS .143 -- 9.7 KEY POINTS 145 -- 10 CONCLUSIONS AND GENERAL DISCUSSION 145 -- REFERENCES .14