Hirschsprung's disease: healthcare meets the needs |
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Authors: | Hartman Esther E Sprangers Mirjam A G Visser Mechteld R M Oort Frans J Hanneman Marianne J G van Heurn L W Ernest de Langen Zacharias J Madern Gerard C Rieu Paul N M A van der Zee David C van Silfhout-Bezemer Marina Aronson Daniel C |
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Affiliation: | a Paediatric Surgical Centre of Amsterdam, Emma Children's Hospital AMC, VUmc, Amsterdam, The Netherlands b Division of Medical Psychology of the University of Amsterdam, Amsterdam, The Netherlands c Department of Paediatric Surgery of the University Hospital of Maastricht, The Netherlands d Department of Paediatric Surgery of the University Hospital of Groningen, The Netherlands e Department of Paediatric Surgery of the University Hospital of Rotterdam, The Netherlands f Department of Paediatric Surgery of the University Hospital of Nijmegen, The Netherlands g Department of Paediatric Surgery of the University Hospital of Utrecht, The Netherlands h Patient Association of Hirschsprung's Disease, The Netherlands |
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Abstract: |
ObjectiveThe 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.MethodsThree 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.ResultsIn 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.ConclusionsThere 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. |
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Keywords: | Hirschsprung's disease Quality of life Healthcare use Healthcare needs Pediatric care |
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