Hirschsprung's disease: healthcare meets the needs.
OBJECTIVE
The objective of this study was to examine the types of healthcare services used by children, adolescents, and adults with Hirschsprung Disease (HD) in relation to the severity of the initial defect (mild, severe), whether additional care was needed, the provision of information, transfer to adult care, and satisfaction with the care provided.


METHODS
Three hundred twenty (71%) HD patients, ages 6 to 54, completed a questionnaire that assessed the use of healthcare services, the need for more healthcare, the provision of information, the transfer to adult care and satisfaction with the provided care.


RESULTS
In 6 months, 45% of the children, 14% of the adolescents, and 15% of the adults consulted a medical specialist. Compared with patients with a mild form of HD in the age range of 6 to 16 years, only the more severely afflicted adult patients visited medical professionals more often (10% vs 29%) (P < .05). Of the children, the adolescents, and the adults 23%, 8%, and 6% respectively consulted a nonmedical professional. Less than 15% of all patients whould have liked more treatment. In 6 months 51% of the children, 24% of the adolescents, and 21% of the adults received treatment information, of which respectively 14, 8, and 20% wished they had received more information. Three (12%) patients who needed adult care encountered problems with the transfer. Almost all patients were satisfied with the care provided.


CONCLUSIONS
There is good access to medical healthcare services, especially for children. The only lacuna in the healthcare system we revealed was a lack of information, particularly for adult patients. Most parents and patients reported to be very satisfied with the provided care.
Hartman
Esther E
EE
Paediatric Surgical Centre of Amsterdam, Emma Children's Hospital AMC, VUmc, Amsterdam, The Netherlands. e.e.hartman@amc.uva.nl
Sprangers
Mirjam A G
MA
Visser
Mechteld R M
MR
Oort
Frans J
FJ
Hanneman
Marianne J G
MJ
van Heurn
L W Ernest
LW
de Langen
Zacharias J
ZJ
Madern
Gerard C
GC
Rieu
Paul N M A
PN
van der Zee
David C
DC
van Silfhout-Bezemer
Marina
M
Aronson
Daniel C
DC
D000293:Adolescent; D000328:Adult; D002648:Child; D003266:Continuity of Patient Care; D006297:Health Services Accessibility / Q000706:statistics & numerical data*; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data*; D006627:Hirschsprung Disease / Q000628:therapy*; D006801:Humans; D008875:Middle Aged; D009426:Netherlands; D010353:Patient Education as Topic; D017060:Patient Satisfaction; D011787:Quality of Health Care