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Overgang naar volwassenheid

De overgang naar volwassenheid is een gekende periode van morbiditeit en mortaliteit voor patiënten met sikkelcelziekte (135). Deze moeilijke overgang kan versterkt worden door de verandering van behandelende arts, beperkte beschikbaarheid van specialisten, moeilijke communicatie tussen zorgverleners en een gebrek aan educatie over de ziekte bij de patiënt. De continuïteit van de zorgverlening garanderen is cruciaal en een transitieplan is geen overbodige luxe (9). Hierdoor wordt onder andere voorkomen dat de patiënt in de toekomst enkel nog op spoedverlenende hulp terugvalt, cf. de statistische stijging in “opnames op spoedgevallen in een periode van 30 dagen” van 27.4% bij patiënten tussen 10 en 17 jaar naar 48.9% voor patiënten tussen 18 en 30 jaar (136). In een recent artikel van Calhoun et al. (135) wordt nogmaals het belang benadrukt van een goede opleiding en opvolging van patiënten in deze periode.

Discussie

Aan de hand van bovenstaande literatuurstudie en op basis van de meest recente richtlijnen (2012) van de Belgian Hematology Society voor de follow-up van kinderen met sikkelcelziekte (87) werd getracht een voorstel voor een vernieuwd protocol voor de follow-up van sikkelcelziekte bij kinderen te definiëren. Er zijn richtlijnen voor het eerste bezoek, de routine- evaluaties, leeftijdsgebonden follow-up en indicaties voor hydroxyureumtherapie.

Daarbij werd ook aandacht besteed aan de opsplitsing van de richtlijnen voor de verschillende genotypes, onderverdeeld in SCD (HbSC en HbS-β+-thalassemie) en SCA (HbSS en HbS-β0- thalassemie) anderzijds. Deze richtlijnen kunnen worden teruggevonden in Appendix.

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