Search

199 p. ill., 1. SEARCH STRATEGIES 6 -- 1.1. MEDLINE 6 -- 1.2. PREMEDLINE 9 -- 1.3. EMBASE 12 -- 1.4. COCHRANE LIBRARY 14 -- 1.5. CINAHL 15 -- 2. SELECTION RESULTS 19 -- 3. QUALITY APPRAISAL 34 -- 3.1. SYSTEMATIC REVIEWS 34 -- 3.2. RANDOMIZED CONTROLLED TRIALS 96 -- 3.2.1. Randomized controlled trials with sufficient information from systematic reviews 96 -- 3.2.2. Randomized controlled trials with insufficient information from systematic reviews 97 -- 4. EVIDENCE TABLES 98 -- 4.1. SYSTEMATIC REVIEWS 98 -- 4.2. RANDOMIZED CONTROLLED TRIALS 121 -- 5. GRADE TABLES 146 -- 5.1. ACUTE BRONCHIOLITIS 146 -- 5.2. CELLULITIS 147 -- 5.3. ACUTE LEUKEMIA 148 -- 5.4. PERFORATED APPENDICITIS 150 -- 5.5. HEMOPHILIA 151 -- 5.6. NEONATAL JAUNDICE 152 -- 5.7. FEBRILE NEUTROPENIA 153 -- 5.8. TYPE 1 DIABETES 155 -- 5.9. NEWBORNS (NORMAL PREGNANCY / DELIVERY) 161 -- 5.10. CAESAREAN DELIVERY 163 -- 5.11. PRETERM INFANTS / (VERY-)LOW-BIRTH-WEIGHT INFANTS 164 -- 5.12. HOSPITAL IV VS. HOME ORAL TREATMENT 167 -- 5.13. HOSPITAL IV VS. HOME IV TREATMENT 168 -- 5.14. ACUTE INFECTIONS 171 -- 6. FOREST PLOTS 172 -- 6.1. ACUTE BRONCHIOLITIS 172 -- 6.1.1. Hospital readmissions within 7 days 172 -- 6.1.2. Caregiver preference home 172 -- 6.1.3. Caregiver preference hospital 172 -- 6.2. CELLULITIS 173 -- 6.2.1. Length-of-stay in emergency department 173 -- 6.2.2. Re-presented to emergency department within 14 days of discharge for same cellulitis 173 -- 6.2.3. Adverse events during care 173 -- 6.2.4. Complications during care 173 -- 6.2.5. Treatment failure 174 -- 6.2.6. Parents who reported very good experience 174 -- 6.2.7. Parents who reported very poor experience 174 -- 6.3. PERFORATED APPENDICITIS 175 -- 6.3.1. Postoperative abscess rate 175 -- 6.4. NEONATAL JAUNDICE 175 -- 6.4.1. Length of stay: duration of phototherapy 175 -- 6.4.2. Maternal stress 175 -- 6.5. FEBRILE NEUTROPENIA 176 -- 6.5.1. Length of stay 176 -- 6.5.2. Mean duration of antibiotics 176 -- 6.5.3. Treatment failure 176 -- 6.5.4. Mortality 177 -- 6.5.5. Duration of fever 177 -- 6.6. TYPE 1 DIABETES 177 -- 6.6.1. Length of stay 177 -- 6.6.2. Patient Satisfaction Survey, overall 178 -- 6.6.3. Satisfaction Scale 178 -- 6.6.4. (Very) satisfied with care in hospital 179 -- 6.6.5. (Very) satisfied with care at home 180 -- 6.6.6. Modified DQOL – satisfaction subscale 180 -- 6.6.7. HbA1c at 12 months 181 -- 6.6.8. HbA1c at 24 months 181 -- 6.6.9. At least one adverse event 181 -- 6.6.10. DRAQ 182 -- 6.6.11. PedsQL 3.0 Diabetes Module – Adherence 182 -- 6.6.12. KINDL-R scale 183 -- 6.6.13. Spielberger Short-form Anxiety 183 -- 6.6.14. Perceived Stress Scale 184 -- 6.6.15. PedsQL Satisfaction Module 184 -- 6.6.16. SF-6D 185 -- 6.7. NEWBORNS (NORMAL PREGNANCY / DELIVERY) 185 -- 6.7.1. Hospital readmissions within 8 weeks 185 -- 6.7.2. Breastfeeding within 8 weeks postpartum 186 -- 6.7.3. Morbidity 186 -- 6.7.4. Satisfaction: 22-item questionnaire 186 -- 6.7.5. Satisfaction: 5-point scale 187 -- 6.7.6. Confidence regarding mothering role 187 -- 6.7.7. Competence 187 -- 6.7.8. SF-12, physical component 187 -- 6.7.9. SF-12, mental component 188 -- 6.8. CAESAREAN DELIVERY 188 -- 6.8.1. Length of stay 188 -- 6.8.2. Acute-care visits within 8 weeks 188 -- 6.8.3. Satisfaction 188 -- 6.9. PRETERM INFANTS / (VERY-)LOW-BIRTH-WEIGHT INFANTS 189 -- 6.9.1. Length of stay 189 -- 6.9.2. Days of full oral feeding in hospital 189 -- 6.9.3. Hospital readmissions within 2 weeks 189 -- 6.9.4. Hospital readmissions within 1 year 190 -- 6.9.5. Mortality at 6-12 months 190 -- 6.9.6. Failure to thrive at 6-12 months 190 -- 6.9.7. Breastfeeding in first 6 weeks 191 -- 6.9.8. Breastfeeding in first 6 months 191 -- 6.10. HOSPITAL IV VS. HOME ORAL TREATMENT 191 -- 6.10.1. Treatment failure 191 -- 6.10.2. Mortality 192 -- 6.11. HOSPITAL IV VS. HOME IV TREATMENT 192 -- 6.11.1. Mean duration of antibiotics 192 -- 6.11.2. Treatment failure 192 -- 6.11.3. Mortality 193 -- 6.12. ACUTE INFECTIONS 193 -- 6.12.1. Hospital readmission within 90 days 193

52 p. ill., La place d’un enfant malade est-elle vraiment à l’hôpital ? D’autres pays que le nôtre ont mis en place des soins pédiatriques « transmuraux », qui permettent de prendre en charge à domicile des enfants qui auraient normalement été traités à l’hôpital. Il a été demandé au Centre fédéral d’Expertise des Soins de Santé (KCE) d’analyser la manière dont la pédiatrie est organisée et financée au sein des hôpitaux belges et d’examiner dans quelle mesure et selon quelles modalités les soins transmuraux pourraient – en partie – éviter des séjours à l’hôpital ou les raccourcir. PRÉFACE 1 -- MESSAGES CLÉS 2 -- SYNTHÈSE 5 -- 1. INTRODUCTION 7 -- 1.1. VERS DE NOUVEAUX MODELES DE SOINS EN PEDIATRIE ? 7 -- 1.2. À PROPOS DE CETTE ETUDE DU KCE : OBJECTIFS ET METHODES 8 -- 2. LES SOINS HOSPITALIERS PÉDIATRIQUES EN BELGIQUE 10 -- 2.1. LE PROGRAMME DE SOINS POUR ENFANTS – CADRE LEGISLATIF 10 -- 2.2. DE NOMBREUX SERVICES, LA PLUPART DE PETITE TAILLE 11 -- 2.3. PROFIL D’ACTIVITE DES SERVICES DE PEDIATRIE 12 -- 2.3.1. L’hôpital de jour 12 -- 2.3.2. Hospitalisations classiques avec séjour 12 -- 2.3.3. Taux d’occupation national – d’importantes variations saisonnières 13 -- 2.3.4. Taux d’occupation local – d’importantes variations d’un hôpital à l’autre 13 -- 2.4. GERER LES PICS SAISONNIERS 15 -- 2.4.1. Un manque de lits, d’infirmiers et parfois de pédiatres 15 -- 2.4.2. Comment les hôpitaux gèrent les pics 15 -- 2.4.3. Mesures politiques possibles pour une meilleure gestion des pics saisonniers 16 -- 2.4.4. Quel rôle pour les réseaux hospitaliers ? 16 -- 3. LES SOINS PÉDIATRIQUES TRANSMURAUX 19 -- 3.1. LES SOINS TRANSMURAUX (POUR ENFANTS) EN BELGIQUE 19 -- 3.1.1. Les équipes de liaison pédiatriques 19 -- 3.1.2. Projets pilotes d’hospitalisation à domicile chez l’adulte 20 -- 3.1.3. Onco@Home 21 -- 3.2. QUELQUES EXEMPLES EN FRANCE, AUX PAYS-BAS ET EN AUSTRALIE 21 -- 3.2.1. Beaucoup de points communs… 21 -- 3.2.2. … mais aussi des différences majeures 22 -- 3.3. LES SOINS TRANSMURAUX POUR ENFANTS SONT-ILS SURS ET EFFICACES ? QUE DIT LA LITTERATURE ? 27 -- 3.4. LEÇONS TIREES DES MODELES INTERNATIONAUX ET NATIONAUX, DES INTERVIEWS AVEC LES ACTEURS CONCERNES ET DE LA LITTERATURE SCIENTIFIQUE 27 -- 3.4.1. Soins pédiatriques transmuraux : pour qui, dans quels contextes et avec quels effets ? 28 -- 3.4.2. Points d’attention pour le déploiement plus large des soins pédiatriques transmuraux 29 -- 3.4.3. Conditions pour la mise en place et l’évaluation de projets pilotes 32 -- 4. CLÉS POUR UN NOUVEL ÉQUILIBRE ENTRE SOINS PÉDIATRIQUES À L’HOSPITAL ET À DOMICILE 34 -- 4.1. OPTIMISER L’ORGANISATION DES SERVICES DE PEDIATRIE 34 -- 4.1.1. Nombre et taille des services de pédiatrie 34 -- 4.1.2. Niveaux de soins hospitaliers pédiatriques 34 -- 4.1.3. Gestion des pics saisonniers 35 -- 4.2. DEVELOPPER LES SOINS TRANSMURAUX POUR ENFANTS EN BELGIQUE 36 -- 4.2.1. Les soins transmuraux peuvent permettre d’éviter que des enfants ne restent (trop) longtemps à l’hôpital, mais ils ne conviennent pas pour tous les patients 36 -- 4.2.2. Les hôpitaux sont divisés sur la question des soins transmuraux pour enfants 36 -- 4.2.3. Trop de questions sans réponse pour privilégier un modèle spécifique 36 -- RECOMMANDATIONS 39 -- RÉFÉRENCES 44

359 p. ill., LIST OF FIGURES 10 -- LIST OF TABLES 15 -- LIST OF ABBREVIATIONS .17 -- SCIENTIFIC REPORT 23 -- 1 INTRODUCTION .23 -- 1.1 THE CHANGING ROLE OF HOSPITAL CARE FOR CHILDREN .23 -- 1.2 OBJECTIVE AND SCOPE OF THE REPORT .24 -- 1.3 RESEARCH OBJECTIVES AND METHODS 25 -- PART I: THE ORGANISATION AND ACTIVITY PROFILE OF PAEDIATRIC SERVICES IN BELGIUM 27 -- 2 THE LEGAL FRAMEWORK OF PAEDIATRIC HOSPITAL CARE IN BELGIUM 27 -- 2.1 THE SYSTEM OF PAEDIATRIC CARE IN BELGIUM .28 -- 2.2 THE LEGAL FRAMEWORK OF PAEDIATRIC HOSPITAL CARE 28 -- 2.2.1 Paediatric service .29 -- 2.2.2 Care programme for children (2006) 30 -- 2.2.3 Care programme for children (2014) 31 -- 2.2.4 The specialised care programme for paediatric haemato-oncology 35 -- 2.2.5 Paediatric liaison function 37 -- 2.2.6 Paediatric network 38 -- 2.2.7 Intensive care for children 39 -- 2.2.8 Conventions 39 -- 2.3 FINANCING 39 -- 2.3.1 Paediatric service and paediatric intensive care 39 -- 2.3.2 Paediatric liaison function 41 -- 2.3.3 Conventions 41 -- 3 LANDSCAPE AND ACTIVITY PROFILE OF SERVICES PROVIDING PAEDIATRIC CARE IN BELGIAN HOSPITALS 41 -- 3.1 INTRODUCTION .43 -- 3.2 METHODS 43 -- 3.3 CURRENT LANDSCAPE OF PAEDIATRIC SERVICES IN BELGIAN HOSPITALS 44 -- 3.4 DAY CARE FOR CHILDREN 51 -- 3.4.1 Selection of stays .51 -- 3.4.2 Distribution of day-care stays .51 -- 3.4.3 Age profile of patients 54 -- 3.4.4 Clinical profile of patients .54 -- 3.5 INPATIENT PAEDIATRIC SERVICES .56 -- 3.5.1 Selection of stays .56 -- 3.5.2 Children and paediatric services 57 -- 3.5.3 Age profile of patients in paediatric services .63 -- 3.5.4 Length of stay for patients in paediatric services .64 -- 3.5.5 Clinical profile of patients .66 -- 3.5.6 Respiratory syncytial virus (RSV) 75 -- 3.6 PAEDIATRIC INTENSIVE CARE UNITS 79 -- 3.6.1 Selection of stays .79 -- 3.6.2 Children in intensive care units .79 -- 3.6.3 Adolescents in intensive care units .82 -- 3.6.4 Age profile of patients 84 -- 3.6.5 Clinical profile of patients .84 -- 4 OCCUPANCY RATE IN SERVICES PROVIDING PAEDIATRIC CARE IN BELGIAN HOSPITALS 87 -- 4.1 OBJECTIVE 87 -- 4.2 METHODS 88 -- 4.2.1 Selection of stays .88 -- 4.2.2 Computation of bed occupancy rates in paediatric services and bed use in other inpatient units .88 -- 4.3 BED OCCUPANCY RATE AND BED USE AT THE NATIONAL LEVEL 90 -- 4.3.1 Daily average bed occupancy rate for 2017 and 2018 .90 -- 4.3.2 Bed occupancy rate in 2018 subdivided by age groups 92 -- 4.3.3 Bed occupancy rate in 2018 subdivided by clinical profile of the patients 95 -- 4.3.4 Bed use outside paediatric services 99 -- 4.4 BED OCCUPANCY RATE AT THE SITE LEVEL 101 -- 4.4.1 Mean, minimum and maximum occupancy rate 101 -- 4.4.2 Number of days with high occupancy rates .107 -- 4.4.3 Number of days with low occupancy rates 108 -- 4.5 BED OCCUPANCY RATE AT THE NETWORK LEVEL 110 -- 4.5.1 Daily average bed occupancy rate for 2018 110 -- 4.5.2 Number of days with high and low occupancy rates 115 -- 4.6 LINK BETWEEN BED OCCUPANCY RATE AND SURVEY RESPONSES .118 -- 5 IMPACT AND MANAGEMENT OF SEASONAL PEAKS: RESULTS FROM AN ONLINE SURVEY 123 -- 5.1 OBJECTIVE .125 -- 5.2 METHODS 125 -- 5.2.1 Data collection process 125 -- 5.2.2 Data collection tool and questionnaire 125 -- 5.2.3 Analysis 126 -- 5.3 RESULTS .127 -- 5.3.1 Response rate .127 -- 5.3.2 Characteristics of hospitals and paediatric services 128 -- 5.3.3 Impact of seasonal peaks in paediatric services 132 -- 5.3.4 Hospital level measures to cope with seasonal peaks in paediatric services 137 -- 5.3.5 General policy measures to cope with seasonal peaks in paediatric services 140 -- 5.3.6 Loco-regional networks 147 -- 5.3.7 Impact of future trends 148 -- PART II: TRANSMURAL CARE FOR CHILDREN IN BELGIUM .151 -- 6 TRANSMURAL CARE MODEL OF THE PAEDIATRIC LIAISON TEAMS IN BELGIUM .151 -- 6.1 OBJECTIVE .153 -- 6.2 METHODS 153 -- 6.2.1 Data collection tool 153 -- 6.2.2 Data collection process 153 -- 6.2.3 Analysis 153 -- 6.3 RESULTS .154 -- 6.3.1 How does a paediatric liaison team work? 154 -- 6.3.2 Target population 157 -- 6.3.3 Type of transmural care .161 -- 6.3.4 Staff numbers, qualifications and roles 168 -- 6.3.5 Funding of paediatric liaison teams .169 -- 6.3.6 Limitations and problems indicated by the paediatric liaison teams 169 -- 6.3.7 The paediatric liaison function as a model for transmural care .172 -- 7 FACTORS INFLUENCING THE IMPLEMENTATION OF TRANSMURAL PAEDIATRIC CARE AND POINT OF VIEW OF STAKEHOLDERS IN BELGIUM 174 -- 7.1 OBJECTIVE .174 -- 7.2 METHODS 174 -- 7.3 GENERAL OPINIONS AND ATTITUDES TOWARDS PAEDIATRIC CARE .175 -- 7.4 OPINIONS AND ATTITUDES TOWARDS TRANSMURAL PAEDIATRIC CARE 176 -- 7.4.1 Terminology to describe transmural paediatric care 176 -- 7.4.2 Target population 177 -- 7.4.3 Transmural paediatric care will further erode paediatric hospital care in Belgium 177 -- 7.4.4 Impact on costs 177 -- 7.5 FACTORS INFLUENCING THE IMPLEMENTATION OF TRANSMURAL PAEDIATRIC CARE 178 -- 7.5.1 Financing 178 -- 7.5.2 Human resources 180 -- 7.5.3 Other factors to consider in the context of transmural paediatric care 183 -- 7.6 LESSONS FROM OTHER INITIATIVES 183 -- 7.6.1 Conventions .184 -- 7.6.2 Lessons from initiatives for transmural care (for adults) 186 -- 7.7 DESIGN AND EVALUATION OF FUTURE PAEDIATRIC PILOT PROJECTS 190 -- 7.7.1 Target population for transmural paediatric care 190 -- 7.7.2 Coordination .192 -- 7.7.3 Funding 193 -- 7.7.4 Distribution of medicines 195 -- 7.7.5 Setting .196 -- 7.7.6 Role of the patient and his family 196 -- 7.7.7 Uniform communication across healthcare providers and/or organisations 198 -- 7.7.8 Other aspects to consider when designing transmural paediatric care .198 -- PART III: INTERNATIONAL COMPARISON OF TRANSMURAL CARE MODELS FOR CHILDREN .200 -- 8 HOSPITAL AT HOME FOR CHILDREN IN FRANCE 202 -- 8.1 OVERVIEW OF HOSPITAL-AT-HOME SERVICES IN FRANCE 203 -- 8.1.1 Historic perspective 203 -- 8.1.2 Current legal framework .204 -- 8.1.3 HAH structures 206 -- 8.1.4 Activity volume 206 -- 8.1.5 Workforce 207 -- 8.1.6 HAH episode 207 -- 8.1.7 Types of care activities 208 -- 8.1.8 Selection of patients .209 -- 8.1.9 Financing 210 -- 8.1.10 Coordination with home nursing care services 212 -- 8.1.11 Evaluation / quality indicators .212 -- 8.1.12 Ongoing reform 213 -- 8.2 PAEDIATRIC ACTIVITY IN HAH IN FRANCE 215 -- 8.3 OVERVIEW OF SELECTED CASE STUDIES .219 -- 8.3.1 Semi-structured interviews with a selection of organisations .219 -- 8.3.2 Brief overview of selected HAH structures 220 -- 8.3.3 Transversal analysis of key topics 229 -- 9 HOSPITAL IN THE HOME FOR CHILDREN IN AUSTRALIA .238 -- 9.1 OVERVIEW OF HOSPITAL IN THE HOME SERVICES IN THE STATE OF VICTORIA (AUSTRALIA) .239 -- 9.1.1 Historic perspective 239 -- 9.1.2 Legal framework .240 -- 9.1.3 HITH structures 241 -- 9.1.4 Workforce 244 -- 9.1.5 HITH episode 245 -- 9.1.6 Types of care 246 -- 9.1.7 Selection of patients .247 -- 9.1.8 Financing 248 -- 9.1.9 Coordination with home nursing care .249 -- 9.1.10 Evaluation / quality indicators .249 -- 9.2 OVERVIEW OF HOSPITAL IN THE HOME SERVICES IN THE STATE OF NEW SOUTH WALES (AUSTRALIA) 250 -- 9.2.1 Historic perspective 250 -- 9.2.2 Legal framework .251 -- 9.2.3 HITH structures 251 -- 9.2.4 Workforce 252 -- 9.2.5 HITH episode 253 -- 9.2.6 Types of care 254 -- 9.2.7 Selection of patients .255 -- 9.2.8 Financing 255 -- 9.2.9 Coordination with home nursing care .256 -- 9.2.10 Evaluation / quality indicators .256 -- 9.3 OVERVIEW OF SELECTED CASE STUDIES .257 -- 9.3.1 Semi-structured interviews with a selection of organisations .257 -- 9.3.2 Brief overview of the selected paediatric HITH programmes .258 -- 9.3.3 Transversal analysis of key topics 260 -- 10 TRANSMURAL PAEDIATRIC CARE IN THE NETHERLANDS 268 -- 10.1 TWO REFORMS SHAPED THE CURRENT HEALTHCARE SYSTEM IN THE NETHERLANDS 269 -- 10.1.1 Main characteristics of the 2006 health insurance reform 269 -- 10.1.2 Main characteristics of the 2015 long-term care reform 269 -- 10.2 HISTORICAL PERSPECTIVE OF TRANSMURAL CARE FOR ADULTS 270 -- 10.2.1 From temporary projects to a clear policy objective 271 -- 10.2.2 Organisation of transmural care for adults 272 -- 10.3 TRANSMURAL CARE FOR CHILDREN 273 -- 10.3.1 From a fragmented policy context to a comprehensive approach for transmural care for children 273 -- 10.3.2 Strategies to ensure quality of care .279 -- 10.3.3 Funding of transmural care for children .280 -- 10.3.4 Education and training of paediatric nurses .282 -- 10.4 OVERVIEW OF SELECTED CASE STUDIES .283 -- 10.4.1 Semi-structured interviews with a selection of organisations .283 -- 10.4.2 ExpertCare 283 -- 10.4.3 KinderThuisZorg .285 -- PART IV: REVIEW OF THE LITERATURE ON PAEDIATRIC HOME THERAPY 287 -- 11 REVIEW OF THE LITERATURE ON PAEDIATRIC HOME THERAPY .287 -- 11.1 INTRODUCTION 287 -- 11.2 METHODS 287 -- 11.2.1 Research question 287 -- 11.3 LITERATURE SEARCH AND SELECTION 289 -- 11.3.1 Quality appraisal and data extraction 289 -- 11.3.2 Statistical analysis .290 -- 11.3.3 GRADE 290 -- 11.4 RESULTS .290 -- 11.4.1 Overview of selected studies 290 -- 11.4.2 Characteristics of home care 302 -- 11.4.3 Effect on outcomes by type of intervention 314 -- 11.5 DISCUSSION .329 -- APPENDICES 332 -- REFERENCES 339

81 ill., FOREWORD 1 -- SHORT REPORT 2 -- 1. INTRODUCTION 5 -- 1.1. THE CHANGING ROLE OF HOSPITAL CARE FOR CHILDREN 5 -- 1.2. OBJECTIVE AND SCOPE OF THE REPORT 6 -- 1.3. METHODS 7 -- 2. CURRENT ORGANISATION AND ACTIVITY PROFILE OF PAEDIATRIC SERVICES IN BELGIAN -- HOSPITALS 8 -- 2.1. THE LEGAL FRAMEWORK OF PAEDIATRIC HOSPITAL CARE 8 -- 2.1.1. Paediatric service 8 -- 2.1.2. Care programme for children 9 -- 2.2. CURRENT LANDSCAPE OF PAEDIATRIC SERVICES IN BELGIAN HOSPITALS 10 -- 2.3. ACTIVITY PROFILE OF HOSPITAL SERVICES PROVIDING CARE FOR CHILDREN 11 -- 2.3.1. Regional differences in activity profile 12 -- 2.3.2. Age and clinical profile of patients 13 -- 2.3.3. Length of stay and readmissions 14 -- 3. HOW DO HOSPITALS RESPOND TO VARIABILITY IN BED DEMAND? 16 -- 3.1. NUMBER OF HOSPITAL BEDS OCCUPIED BY CHILDREN AT THE NATIONAL LEVEL 18 -- 3.2. BED OCCUPANCY RATE AT THE HOSPITAL SITE LEVEL 19 -- 3.3. CHALLENGES OF AND SOLUTIONS FOR SEASONAL PRESSURES ON HOSPITAL RESOURCES 21 -- 3.3.1. Shortage of beds and nursing staff are the main culprits 21 -- 3.3.2. How do hospitals deal with seasonal peaks in hospital admissions? 22 -- 3.3.3. Which policy measures could help hospitals to deal with seasonal peaks? 22 -- 3.4. OPPORTUNITIES AND LIMITS OF HOSPITAL NETWORKS FOR MANAGING SEASONAL DEMAND PRESSURES 25 -- 3.4.1. The introduction of loco-regional networks to get competing hospitals to collaborate 25 -- 3.4.2. Mixed picture among hospitals of the potential impact of hospital networks 25 -- 3.4.3. Collaboration within and between networks to absorb peaks in bed demand 26 -- 4. TRANSMURAL CARE FOR CHILDREN: LESSONS FROM INTERNATIONAL EXPERIENCE 28 -- 4.1.1. A shift from pilot projects for adults to everyday practice for adults and children 28 -- 4.1.2. A broad range of programmes and structures to provide transmural care for children 29 -- 4.1.3. Key features of a paediatric transmural care episode 30 -- 4.1.4. Range of services provided in transmural care programmes 32 -- 4.1.5. Range of clinical conditions treated in transmural care programmes 33 -- 4.1.6. Exclusion criteria for providing transmural paediatric care 34 -- 4.1.7. Workforce requirements 34 -- 4.1.8. Funding systems for transmural paediatric care 36 -- 4.1.9. Public reporting of quality indicators and financial incentives to promote the quality of care 39 -- 5. EFFECTIVENESS AND SAFETY OF HOME-BASED CARE FOR CHILDREN 40 -- 6. TRANSMURAL CARE FOR CHILDREN IN BELGIUM 42 -- 6.1. TRANSMURAL CARE PROVIDED AND SUPPORTED BY THE PAEDIATRIC LIAISON TEAMS 42 -- 6.1.1. How does a paediatric liaison team work? 42 -- 6.1.2. Licensing standards define staff numbers and qualifications 43 -- 6.1.3. Profile of children cared for by the paediatric liaison teams 44 -- 6.1.4. Paediatric liaison teams provide a broad range of support and care 44 -- 6.1.5. Obstacles in daily practice and barriers to growth 47 -- 6.2. THE VIEWS OF BELGIAN STAKEHOLDERS ON THE (FURTHER) DEVELOPMENT OF TRANSMURAL CARE FOR CHILDREN 48 -- 6.2.1. General opinions and attitudes towards transmural paediatric care 48 -- 6.2.2. Preconditions for a further development of transmural care for children in Belgium 50 -- 6.2.3. Key lessons on the organisation of transmural care from pilot projects in Belgium 53 -- 6.2.4. Preconditions for the design and evaluation of pilot projects 55 -- 7. KEY ELEMENTS FOR A NEW BALANCE BETWEEN CURRENT AND NEW MODELS OF CARE FOR CHILDREN IN BELGIUM 56 -- 7.1. NUMBER AND SIZE OF PAEDIATRIC SERVICES 57 -- 7.2. LEVELS OF PAEDIATRIC HOSPITAL CARE 57 -- 7.3. MANAGEMENT OF SEASONAL PEAKS AT THE LEVEL OF THE LOCO-REGIONAL NETWORKS 58 -- 7.4. WHY SHOULD WE (OR NOT) DEVELOP TRANSMURAL CARE FOR CHILDREN IN BELGIUM? 59 -- 7.5. TOO MANY UNANSWERED QUESTIONS TO CHOOSE BETWEEN TRANSMURAL CARE MODELS 59 -- RECOMMENDATIONS 61 -- REFERENCES 66

50 p. ill., Hoort een ziek kind echt in het ziekenhuis? Andere landen hebben "transmurale" zorg voor kinderen ingevoerd, waarbij kinderen die normaal gesproken in het ziekenhuis worden behandeld, thuis kunnen worden verzorgd. Het Federaal Kenniscentrum voor de Gezondheidszorg (KCE) werd gevraagd de organisatie en financiering van zorg voor kinderen in Belgische ziekenhuizen te analyseren en na te gaan in welke mate en op welke wijze transmurale zorg ziekenhuisopnames – gedeeltelijk – zou kunnen vermijden of inkorten VOORWOORD 1 -- KERN BOODSCHAPPEN 2 -- 1. INLEIDING 7 -- 1.1. NAAR NIEUWE ZORGMODELLEN IN DE PEDIATRIE? 7 -- 1.2. OVER DEZE KCE-STUDIE: DOELEN EN METHODES . 8 -- 2. PEDIATRISCHE ZIEKENHUISZORG IN BELGIË 10 -- 2.1. HET ZORGPROGRAMMA VOOR KINDEREN – WETGEVEND KADER 10 -- 2.2. VEEL DIENSTEN, MEESTAL BEPERKT IN OMVANG . 11 -- 2.3. ACTIVITEITENPROFIEL VAN DE DIENSTEN PEDIATRIE 12 -- 2.3.1. Dagziekenhuis 12 -- 2.3.2. Klassieke ziekenhuisopnames met verblijf 12 -- 2.3.3. Nationale bezettingsgraad – grote seizoensgebonden verschillen 13 -- 2.3.4. Lokale bezettingsgraad – grote verschillen tussen ziekenhuizen 13 -- 2.4. OMGAAN MET SEIZOENSPIEKEN 15 -- 2.4.1. Tekort aan bedden, verpleegkundigen, soms ook aan kinderartsen 15 -- 2.4.2. Hoe ziekenhuizen de pieken aanpakken 15 -- 2.4.3. Hoe beleid kan helpen om seizoenspieken op te vangen . 16 -- 2.4.4. Welke rol kunnen ziekenhuisnetwerken opnemen? . 16 -- 3. TRANSMURALE PEDIATRISCHE ZORG 19 -- 3.1. TRANSMURALE ZORG (VOOR KINDEREN) IN BELGIË 19 -- 3.1.1. Pediatrische liaisonteams 19 -- 3.1.2. Pilootprojecten rond thuishospitalisatie bij volwassenen 20 -- 3.1.3. Onco@Home 20 -- 3.2. VOORBEELDEN UIT NEDERLAND, FRANKRIJK EN AUSTRALIË 21 -- 3.2.1. Veel gemeenschappelijke kenmerken, … 21 -- 3.2.2. … maar ook belangrijke verschillen 21 -- 3.3. IS TRANSMURALE ZORG VOOR KINDEREN VEILIG EN DOELTREFFEND? WAT ZEGT DE LITERATUUR? 26 -- 3.4. INZICHTEN UIT INTERNATIONALE EN NATIONALE MODELLEN, UIT INTERVIEWS MET BETROKKENEN EN UIT DE WETENSCHAPPELIJKE LITERATUUR . 26 -- 3.4.1. Transmurale pediatrische zorg: voor wie, wanneer en met welke effecten? 27 -- 3.4.2. Aandachtspunten voor een verdere ontwikkeling van transmurale pediatrische zorg . 28 -- 3.4.3. Randvoorwaarden voor het opzetten en evalueren van pilootprojecten 31 -- 4. SLEUTELS VOOR EEN NIEUWE BALANS TUSSEN ZIEKENHUISZORG EN THUISZORG VOOR KINDEREN 33 -- 4.1. OPTIMALISEREN VAN DE ORGANISATIE VAN DE DIENSTEN PEDIATRIE 33 -- 4.1.1. Aantal en omvang van de diensten pediatrie 33 -- 4.1.2. Niveaus pediatrische ziekenhuiszorg 33 -- 4.1.3. Beheer van seizoenspieken 34 -- 4.2. ONTWIKKELEN TRANSMURALE ZORG VOOR KINDEREN IN BELGIË . 35 -- 4.2.1. Transmurale zorg kan voorkomen dat kinderen onnodig (lang) in ziekenhuizen verblijven, maar is niet voor alle kinderen geschikt 35 -- 4.2.2. Ziekenhuizen zijn verdeeld in hun opvattingen over transmurale zorg voor kinderen . 35 -- 4.2.3. Te veel onbeantwoorde vragen om te kiezen tussen transmurale zorgmodellen . 35 -- AANBEVELINGEN 37 -- REFERENTIES 42

12 p. ill., Protontherapie is een radiotherapie-techniek waarmee kankergezwellen intensief kunnen worden bestraald, terwijl de omliggende weefsels (grotendeels) worden gespaard. De laatste jaren kreeg de techniek veel aandacht, omdat er in ons land twee projecten voor protontherapie lopende zijn, één in Leuven en één in Charleroi. De behandeling wordt jaarlijks gegeven aan ongeveer vijftig Belgische patiënten, vaak kinderen met zeldzame kankers. Ze worden momenteel in gespecialiseerde centra in het buitenland behandeld, en dit wordt volledig vergoed door het RIZIV. Vooraleer de terugbetaling van deze zeer dure techniek uit te breiden naar andere soorten kanker, vroeg het RIZIV aan het Federaal Kenniscentrum voor de Gezondheidszorg (KCE) om de werkzaamheid ervan te onderzoeken. Het KCE vond na een grondige analyse van de internationale wetenschappelijke literatuur helaas geen onweerlegbaar bewijs dat de techniek beter is dan de klassieke radiotherapie.

161 p. ill., 1. SEARCH STRATEGIES 4 -- 1.1. ELECTRONIC DATABASES 4 -- 2. SELECTION RESULTS 17 -- 3. QUALITY APPRAISAL 38 -- 3.1. HTA REPORTS AND SYSTEMATIC REVIEWS 39 -- 3.1.1. CADTH 2017 39 -- 3.1.2. Dionisi F 2014 42 -- 3.1.3. ICER 2014 46 -- 3.1.4. INESSS 2017 50 -- 3.1.5. KCE 2007 54 -- 3.1.6. Lodge M 2007 57 -- 3.1.7. Olsen DR 2007 61 -- 3.1.8. Patel SH 2014 64 -- 3.1.9. Qi W-X 2015 68 -- 3.1.10. QUERI 2015 72 -- 3.1.11. RIHTA 75 -- 3.2. COMPARATIVE STUDIES 79 -- 3.3. SINGLE-ARM STUDIES 79 -- 4. EVIDENCE TABLES 82 -- 4.1. HTA REPORTS AND SYSTEMATIC REVIEWS 82 -- 4.2. COMPARATIVE STUDIES 100 -- 4.3. SINGLE-ARM STUDIES 109 -- 5. GRADE TABLES 143 -- 5.1. LOW-GRADE GLIOMA 143 -- 5.2. BREAST CANCER 143 -- 5.3. PANCREATIC CANCER 145 -- 5.4. HEPATOCELLULAR CANCER 146 -- 6. FOREST PLOTS 147

37 p. ill., LIST OF TABLES 3 -- LIST OF ABBREVIATIONS 4 -- SCIENTIFIC REPORT 6 -- 1 INTRODUCTION 6 -- 1.1 BACKGROUND 6 -- 1.2 BELGIAN CONTEXT 6 -- 1.3 PROJECT SCOPE 7 -- 1.4 INCIDENCE AND PROGNOSIS .9 -- 1.5 AIM OF THE STUDY 9 -- 2 METHODOLOGY 10 -- 2.1 CLINICAL RESEARCH QUESTION 10 -- 2.2 LITERATURE SEARCH AND SELECTION .10 -- 2.3 QUALITY APPRAISAL AND DATA EXTRACTION 11 -- 2.3.1 Quality appraisal 11 -- 2.3.2 Data extraction 11 -- 2.4 STATISTICAL ANALYSIS 11 -- 2.5 GRADE .12 -- 3 RESULTS .12 -- 3.1 OVERVIEW OF SELECTED STUDIES .12 -- 3.2 SYSTEMATIC REVIEWS AND HTA REPORTS 18 -- 3.3 EFFECTIVENESS BY INDICATION 19 -- 3.3.1 Low-grade glioma .19 -- 3.3.2 Primary sinonasal tumours and recurrences of head & neck tumours .19 -- 3.3.3 Breast cancer 19 -- 3.3.4 Pancreatic cancer 19 -- 3.3.5 Hepatocellular cancer .20 -- 3.3.6 Locally recurrent rectal cancer 20 -- 3.3.7 Key points 20 -- 3.4 SAFETY 21 -- 3.4.1 Low-grade glioma .21 -- 3.4.2 Primary sinonasal tumours and recurrences of head & neck tumours .22 -- 3.4.3 Breast cancer 23 -- 3.4.4 Pancreatic cancer 24 -- 3.4.5 Hepatocellular cancer .25 -- 3.4.6 Locally recurrent rectal cancer 28 -- 3.4.7 Key points 28 -- 3.5 SECONDARY TUMOURS .29 -- 3.6 ONGOING TRIALS 29 -- 4 DISCUSSION .31 -- 4.1 SCARCE AND FLAWED EVIDENCE ON THE EFFECTIVENESS OF PROTON TREATMENT .31 -- 4.2 UNCERTAINTY ABOUT THE SAFETY OF PROTON TREATMENT .32 -- 4.3 FEW DATA ON SECONDARY TUMOURS .32 -- 4.4 SOME RCTS UNDERWAY, BUTNOT IN THE VERYNEAR FUTURE 33 -- 4.5 LIMITATIONS OF THIS REPORT 33 -- REFERENCES .34