Chronische zorgbehoeften bij personen met een NAH - KCE

KCE reports 51 NAH 1
Scientific summary
Table of contents
1 DEFINITIE EN IDENTIFICATIE VAN DOELGROEPEN EN ZORGBEHOEFTEN 5
1.1 Inleiding .................................................................................................................................. 5
1.2 Literatuuronderzoek........................................................................................................... 5
1.2.1 NAH-doelgroepen.................................................................................................. 6
1.2.2 NAH – residentiële zorg....................................................................................... 7
1.2.3 Besluit......................................................................................................................11
1.3 Grijze bronnen ...................................................................................................................12
1.3.1 Engelstalige ‘grijze literatuur’ omtrent acquired brain injury of ABI..........12
1.3.2 Franstalige ‘grijze literatuur’ omtrent lésions cérébrales acquises.............13
1.3.3 Nederlandstalige ‘grijze literatuur’ omtrent niet-aangeboren hersenletsel
of NAH ...................................................................................................................13
1.3.4 Rapport Australian Institute of Health and Welfare (AIHW) ‘Definition,
incidence and prevalence of ABI in Australia’ Fortune & Wen, 1999......13
1.4 Samenvatting .......................................................................................................................16
1.5 Besluit ...................................................................................................................................20
2 EPIDEMIOLOGIE (INCIDENTIE EN PREVALENTIE) ............................................. 25
2.1 Inleiding ................................................................................................................................25
2.2 Traumatisch hersenletsel (TBI: traumatic brain injury)............................................25
2.3 Cerebrovasculair Accident (CVA).................................................................................28
2.4 Andere vormen van niet-degeneratief NAH...............................................................33
2.5 Besluit niet-degeneratieve vormen van NAH (ABI)..................................................34
2.6 Multiple Sclerose (MS)......................................................................................................36
2.7 Ziekte van Huntington......................................................................................................38
2.8 Gedragsproblemen bij NAH...........................................................................................39
2.9 Besluit ...................................................................................................................................41
2.9.1 Niet-Degeneratief NAH (NAH-ND) ...............................................................41
2.9.2 Degeneratief NAH (NAH-D).............................................................................43
3 “ZORGNOOD”: DEFINITIE EN LITERATUURGEGEVENS VOOR DE
DOELGROEP ................................................................................................................. 44
3.1 Inleiding ................................................................................................................................44
3.2 Definities en Begrippenkader: Zorgnood, zware zorgbehoevendheid,
Zorgnoodevaluatie ............................................................................................................44
3.2.1 Begripsbepaling: Noden of Behoeften - Gezondheidsnood - Nood aan
gezondheidszorg of Zorgnood...........................................................................44
3.2.2 Meten van zorgnoden; het begrip “Zware Zorgbehoevendheid” ..............45
3.2.3 Evaluatie van zorgnoden of “Health care needs assessment”: Theoretische
achtergrond............................................................................................................47
3.3 Literatuurstudie: Zorgnoden bij Personen met NAH (18-65 jaar) uit de
geselecteerde doelgroepen .............................................................................................48
3.3.1 CVA.........................................................................................................................48
3.3.2 Traumatisch Hersenletsel (TBI).........................................................................49
3.3.3 Multiple Sclerose...................................................................................................50
3.3.4 Ziekte van Huntington.........................................................................................51
4 ENQUETE NAAR PREVALENTIE, KENMERKEN EN ZORGNODEN VAN DE
NAH-DOELGROEP IN BELGIE................................................................................... 53
4.1 Inleiding ................................................................................................................................53
4.2 Werkwijze...........................................................................................................................53
4.2.1 Enquête Voorzieningen........................................................................................53
4.2.2 Enquête Thuiszorg................................................................................................57
4.3 Resultaten............................................................................................................................58
4.3.1 Enquête Voorzieningen........................................................................................58
4.3.2 Enquête Thuiszorg................................................................................................85