Februari 2012
3
Inhoudsopgave
1
Voorwoord ...........................................................................................................................................4
1.1
Expertise centrum .............................................................................................................4
1.2
Patiëntenvereniging ..........................................................................................................5
1.3
Leeswijzer..........................................................................................................................5
2
VLCADD ................................................................................................................................................6
2.1
Presentatie ........................................................................................................................6
2.2
Diagnostiek........................................................................................................................6
2.3
Behandeling.......................................................................................................................7
3
Begeleiding - kinderen..........................................................................................................................9
3.1
Patiënt en/of ouders .......................................................................................................10
3.2
Casemanager ...................................................................................................................10
3.3
Kinderarts metabole ziekten............................................................................................10
3.4
Vaste medebehandelaren: diëtist....................................................................................13
3.5
Vaste medebehandelaren: kinderneuroloog ...................................................................14
3.6
Vaste medebehandelaren: kinderfysiotherapeut ............................................................14
3.7
Vaste medebehandelaren: kindercardioloog...................................................................14
3.8
Overige betrokken zorgverleners ....................................................................................15
4
Begeleiding - Volwassenen............................................................................................................... 16
4.1
Patiënt .............................................................................................................................17
4.2
Casemanager ...................................................................................................................17
4.3
Internist metabole ziekten ..............................................................................................17
4.4
Vaste medebehandelaren: diëtist....................................................................................20
4.5
Vaste medebehandelaren: neuroloog .............................................................................20
4.6
Vaste medebehandelaren: fysiotherapeut ......................................................................21
4.7
Vaste medebehandelaren: cardioloog .............................................................................21
4.8
Overige betrokken zorgverleners ....................................................................................21
5
Kwaliteitsindicatoren ........................................................................................................................ 23
6
VLCADD – Latest Evidence ................................................................................................................ 24
6.1
Referenties ......................................................................................................................25
7
Consensus zorgpad VLCADD ............................................................................................................. 27
8
Disclaimer.......................................................................................................................................... 27