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Long-term outcome of anorectal malformations: the patient perspective

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Abstract

To assess the long-term outcome of surgery for anorectal malformations (ARM) from the patient’s perspective. One hundred and sixty seven children were operated for ARM between 1982 and 2000. Disease impact questionnaires to assess both clinical and psychological outcomes were sent to 137 eligible families. Statistical analysis was performed using SPSS version 11.5. The response rate was 61% (n = 84). Sixty six percent had soiling. There was no significant difference in the incidence of soiling between genders or between the younger child and adolescent. Soiling was significantly increased in high (86%) and intermediate (79%) compared to low (43%) malformation (P = 0.001). Constipation was seen in 62% and abdominal pain in 49%, with no significant difference between malformation levels. Overall, 71% had associated anomalies. Although 44% had a documented urological abnormality, clinical significant problems were seen in only 30%. Eighty percent of the children had one or more behavioural problems and 15% expressed suicidal thoughts. ARM had a negative impact on the social life of the child in 52% and on family functioning in 50%. Soiling (P = 0.000), presence of associated anomalies (P = 0.001), constipation (P = 0.005), level of ARM (P = 0.015) and abdominal pain (P = 0.039) correlated significantly with psychosocial morbidity. Despite these findings, 62% of adolescents and 71% of children below 12 years with their parents reported above average global hopefulness score, remaining hopeful for the future. Children with ARM have ongoing physical and social morbidity, indicating the need for continuing multidisciplinary review and support to optimise their quality of life.

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Acknowledgments

The authors would like to thank Ms Helen Athanasakos for permission to modify the questionnaire—Hirschsprung’s Disease Family Impact Questionnaire—to suit children with ARM, and Mr. Glen Duncan for statistical advice. We would also like to thank all the children with anorectal malformation and their parents for their co-operation with this study.

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Authors and Affiliations

  1. Department of Academic Surgery, The Children’s Hospital at Westmead, The University of Sydney, Westmead, New South Wales, 2145, Australia

    C. H. Hamid & A. J. A. Holland

  2. Douglas Cohen Department of Paediatric Surgery, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia

    H. C. O. Martin

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  1. C. H. Hamid
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  2. A. J. A. Holland
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  3. H. C. O. Martin
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Correspondence to A. J. A. Holland.

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Hamid, C.H., Holland, A.J.A. & Martin, H.C.O. Long-term outcome of anorectal malformations: the patient perspective. Pediatr Surg Int 23, 97–102 (2007). https://doi.org/10.1007/s00383-006-1841-2

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