Pagina 3 - Zorgpad Klassieke Galactosemie patienten

November 2011 3
Inhoudsopgave
1 Introductie............................................................................................................................................4
1.1 Zorgpad...............................................................................................................................4
1.2 Samenwerking ....................................................................................................................4
1.3 Patiëntenverenigingen........................................................................................................5
1.4 Leeswijzer ...........................................................................................................................5
2 Klassieke galactosemie.........................................................................................................................6
2.1 Presentatie .........................................................................................................................6
2.2 Diagnose .............................................................................................................................7
2.3 Behandeling ........................................................................................................................7
3 Begeleiding – Kinderen.........................................................................................................................9
3.1 Patiënt en ouders..............................................................................................................10
3.2 Casemanager ....................................................................................................................10
3.3 Kinderarts metabole ziekten .............................................................................................10
3.4 Vaste medebehandelaren: diëtist .....................................................................................12
3.5 Vaste medebehandelaren: kinderendocrinoloog ..............................................................13
3.6 Vaste medebehandelaren: logopedist ..............................................................................13
3.7 Vaste medebehandelaren: kinderpsycholoog ...................................................................13
3.8 Vaste medebehandelaren: oogarts ...................................................................................14
3.9 Overige betrokken zorgverleners......................................................................................14
3.10 Overige aandachtspunten.................................................................................................15
4 Begeleiding – Volwassenen............................................................................................................... 17
4.1 Patiënt ..............................................................................................................................18
4.2 Casemanager ....................................................................................................................18
4.3 Internist Metabole Ziekten ...............................................................................................18
4.4 Vaste medebehandelaren: diëtist .....................................................................................21
4.5 Vaste medebehandelaren : gynaecoloog ..........................................................................21
4.6 Overige betrokken zorgverleners......................................................................................21
4.7 Overige aandachtspunten.................................................................................................22
5 Kwaliteitsindicatoren ........................................................................................................................ 24
6 Consensus zorgpad klassieke galactosemie..................................................................................... 25
7 Disclaimer.......................................................................................................................................... 25