title: Anorectal malformations: does healthcare meet the needs?
abstract: OBJECTIVE
  The first aim was to identify the types of healthcare services used by children, adolescents, and adults with anorectal malformation (ARM) in relation to the severity of their disease and to examine whether additional care was needed. The second aim was to evaluate specific areas in the healthcare system, including provided information, transfer from pediatric to adult care, and satisfaction with the provided care.
  
  
  METHODS
  Three hundred eighty-six (61%) patients with ARM, ages 6 to 52, completed a questionnaire that assessed their use of healthcare services and the need for additional services. Also, questions were asked about specific areas in the healthcare system. Clinical and sociodemographic characteristics were extracted from medical records.
  
  
  RESULTS
  In the preceding 6 months 50% of the children, 24% of the adolescents, and 24% of the adults consulted a medical specialist. Compared with patients with a mild form of ARM in the age range of 6 to 16 years, the more severely afflicted patients visited medical professionals more often (18% vs. 32%). Particularly, adolescents in the age range of 12 to 16 years with a severe form of the disease more often visited the pediatric surgeon than their peers with a mild form (2% vs. 16%). Twenty-three percent of the children, 7% of the adolescents, and 8% of the adults consulted a nonmedical professional. Twenty percent of the children, 13% of the adolescents, and 17% of the adults would have liked additional or more treatment of a nonmedical professional. In 6 months, 40% of the children, 24% of the adolescents, and 20% of the adults received treatment information. One third of the adult patients who were transferred to "adult" surgeons encountered transfer problems. Almost all patients were satisfied with the care provided.
  
  
  CONCLUSIONS
  There is good access to medical healthcare services, especially for children. However, more psychosocial and paramedical care is considered necessary. As could be expected, children and adolescents with a severe form of the disease reported to have visited a medical specialist more often. Although healthcare for patients with ARM may be improved at certain points, most parents and patients were very satisfied with the care provided.
authors.affiliation: Pediatric Surgical Centre of Amsterdam (Emma Children's Hospital, Academic Medical Centre/University of Amsterdam), The Netherlands. e.e.hartman@amc.uva.nl
authors.forename: Esther E
authors.initials: EE
authors.lastname: Hartman
authors.forename: Mirjam A G
authors.initials: MA
authors.lastname: Sprangers
authors.forename: Mechteld R M
authors.initials: MR
authors.lastname: Visser
authors.forename: Frans J
authors.initials: FJ
authors.lastname: Oort
authors.forename: Marianne J G
authors.initials: MJ
authors.lastname: Hanneman
authors.forename: L W Ernest
authors.initials: LW
authors.lastname: van Heurn
authors.forename: Zacharias J
authors.initials: ZJ
authors.lastname: de Langen
authors.forename: Gerard C
authors.initials: GC
authors.lastname: Madern
authors.forename: Paul N M A
authors.initials: PN
authors.lastname: Rieu
authors.forename: David C
authors.initials: DC
authors.lastname: van der Zee
authors.forename: N
authors.initials: N
authors.lastname: Looyaard
authors.forename: Daniel C
authors.initials: DC
authors.lastname: Aronson
mesh_terms: D000293:Adolescent; D000328:Adult; D001003:Anal Canal / Q000002:abnormalities* / Q000601:surgery; D002648:Child; D002662:Child Health Services / Q000592:standards; D005260:Female; D006301:Health Services Needs and Demand; D006302:Health Services Research; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D011183:Postoperative Complications; D011785:Quality Assurance, Health Care; D012007:Rectum / Q000002:abnormalities* / Q000601:surgery; D012189:Retrospective Studies; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires