Anorectal Malformations: Does Healthcare Meet the Needs? *†Esther E. Hartman, †Mirjam A. G. Sprangers, †Mechteld R. M. Visser, †Frans J. Oort, *†Marianne J. G. Hanneman, ‡L. W. Ernest van Heurn, §Zacharias J. de Langen, k Gerard C. Madern, {Paul N. M. A. Rieu, #David C. van der Zee, **N. Looyaard, and *Daniel C. Aronson *Pediatric Surgical Centre of Amsterdam (Emma Children’s Hospital AMC, VUmc), †Division of Medical Psychology of the University of Amsterdam, and Departments of Pediatric Surgery of the University Hospitals of ‡Maastricht, §Groningen, k Rotterdam, {Nijmegen, and #Utrecht, and the **Patient Association of Anorectal Malformation ABSTRACT Objectives: 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 health- care 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 spe- cialist. 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%). Par- ticularly, 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 treat- ment of a nonmedical professional. In 6 months, 40% of the children, 24% of the adolescents, and 20% of the adults re- ceived 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 ser- vices, especially for children. However, more psychosocial and paramedical care is considered necessary. As could be ex- pected, 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. JPGN 41:210–215, 2005. Key Words: Anorectal malformation—Quality of life—Healthcare use— Care needs. Ó 2005 Lippincott Williams & Wilkins INTRODUCTION Patients with surgically corrected anorectal malforma- tion (ARM) have to cope with physical problems that frequently continue into adulthood, such as fecal and urinary incontinence, constipation, and sexual dysfunc- tioning (1–5). A significant number of patients with ARM also experience psychosocial problems, including feelings of shame, impaired self-esteem, and lack of social support (2,3,6–10). These physical and psychoso- cial problems were found to affect patients’ quality of life (11). To decrease the negative impact of the disease and to improve their quality of life, life-long continued care is often required (12,13). The pediatric surgeon and the general practitioner (GP) are the primary treatment providers for patients with ARM. Treatment by pediatric surgeons include sur- gical interventions, anal dilatations, and prescription of various laxatives and enemas. Pediatric surgeons also provide the necessary information about diet and toilet habits (14–16). GPs complete the care of pediatric sur- geons and may prescribe medication, diet, and inconti- nence material. They can also refer the patient to another Received December 15, 2004; accepted April 19, 2005. Address correspondence and reprint requests to Esther E. Hartman, Academic Medical Centre/University of Amsterdam, Building J4-408, Meibergdreef 9 1115 AZ, Amsterdam, The Netherlands. (e-mail: e.e.hartman@amc.uva.nl). A grant was provided by Netherlands Digestive Diseases Foundation. Journal of Pediatric Gastroenterology and Nutrition 41:210–215 Ó August 2005 Lippincott Williams & Wilkins, Philadelphia 210