December 2011
3
Inhoudsopgave
1
Voorwoord ...........................................................................................................................................4
1.1
Expertise centrum .............................................................................................................4
1.2
Patiëntenvereniging ..........................................................................................................4
1.3
Leeswijzer..........................................................................................................................5
2
Glycogeen Stapelingsziekte type 3.......................................................................................................6
2.1
Presentatie ........................................................................................................................6
2.2
Diagnostiek........................................................................................................................6
2.3
Behandeling.......................................................................................................................7
3
Begeleiding – Kinderen.........................................................................................................................8
3.1
Patiënt en/of ouders .........................................................................................................9
3.2
Casemanager .....................................................................................................................9
3.3
Kinderarts Metabole Ziekten .............................................................................................9
3.4
Vaste medebehandelaren: diëtist....................................................................................13
3.5
Overige betrokken zorgverleners ....................................................................................14
4
Begeleiding – Volwassenen............................................................................................................... 17
4.1
Patiënt .............................................................................................................................18
4.2
Casemanager ...................................................................................................................18
4.3
Internist Metabole Ziekten ..............................................................................................18
4.4
Vaste medebehandelaren: diëtist....................................................................................22
4.5
Overige betrokken zorgverleners ....................................................................................23
5
Kwaliteitsindicatoren ........................................................................................................................ 25
6
Glycogen Storage Disease type 3 – Latest Evidence ......................................................................... 26
6.1
Reference List ..................................................................................................................27
7
Consensus zorgpad Glycogeen Stapelingsziekte type 3.................................................................... 28
8
Disclaimer.......................................................................................................................................... 28