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Anorectal malformations: does healthcare meet the needs?
Esther E Hartman1, Mirjam A G Sprangers, Mechteld R M Visser
1Pediatric Surgical Centre of Amsterdam (Emma Children's Hospital, Academic Medical Centre/University of Amsterdam), The Netherlands. e.e.hartman@amc.uva.nl
Journal of Pediatric Gastroenterology and Nutrition
|August 2, 2005
Summary
Patients with anorectal malformation (ARM) have good access to medical care, but require more psychosocial and paramedical support. Most patients report high satisfaction with the provided healthcare services.
Area of Science:
- Medical and Health Sciences
- Pediatric Surgery
- Urology
Background:
- Anorectal malformation (ARM) is a congenital condition requiring lifelong healthcare management.
- Understanding healthcare utilization and patient needs is crucial for optimizing care pathways.
Purpose of the Study:
- To identify healthcare services used by children, adolescents, and adults with ARM, correlating usage with disease severity.
- To assess the need for additional services and evaluate specific healthcare system aspects, including information provision, pediatric-to-adult care transition, and patient satisfaction.
Main Methods:
- A questionnaire was completed by 386 patients (ages 6-52) with ARM.
- Data collected included healthcare service utilization, need for additional services, and specific healthcare system experiences.
- Clinical and sociodemographic data were extracted from medical records.
Main Results:
- 50% of children, 24% of adolescents, and 24% of adults consulted a medical specialist in 6 months.
- Severely affected patients (ages 6-16) visited medical professionals more frequently (32%) than mildly affected patients (18%).
- Adolescents (12-16) with severe ARM more often saw a pediatric surgeon (16%) than those with mild ARM (2%).
- 23% of children, 7% of adolescents, and 8% of adults consulted non-medical professionals.
- 20% of children, 13% of adolescents, and 17% of adults desired more non-medical professional treatment.
- 40% of children, 24% of adolescents, and 20% of adults received treatment information.
- One-third of adult patients experienced transfer issues from pediatric to adult care.
- Overall patient satisfaction with care was high.
Conclusions:
- Access to medical healthcare services for ARM patients is generally good, particularly for children.
- There is an identified need for enhanced psychosocial and paramedical care for individuals with ARM.
- Healthcare utilization correlates with ARM severity, with more complex cases requiring more frequent specialist consultations.
- Despite areas for improvement, such as care transition, patient and parent satisfaction with provided care is high.