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Explaining Change Over Time in Quality of Life of Adult Patients With Anorectal Malformations or Hirschsprung's Disease

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Diseases of the Colon & Rectum

Purpose

The aim of this study was to examine changes in the quality of life of adult patients with anorectal malformations or Hirschsprung's disease over a three-year interval and to identify demographic, clinical, and psychosocial variables that explain possible quality-of-life changes. Understanding the factors that affect changes in quality of life over time is particularly important to provide adequate care.

Methods

Questionnaires were administered to 261 patients (77 percent), with a three-year interval. Background characteristics, including demographic and clinical variables, and psychosocial variables (i.e., self-esteem, mastery, social support, disease cognition) were measured on one occasion. Generic and disease-specific quality of life were measured twice.

Results

On average patients indicated no change in quality-of-life level after three years. However, variance in the change scores revealed individual variation, indicating the presence of patients who improved and patients who deteriorated. Patients who were female, older, have other congenital diseases, or a stoma reported poorer quality of life over time. The psychosocial variable “disease cognition” most strongly affected the change in quality of life of patients with anorectal malformations or Hirschsprung's disease.

Conclusions

Our results could alert clinicians to patients who are at risk for quality-of-life deterioration and might therefore be in need for extra care. Our findings illustrate the importance of psychosocial functioning for enhancing the quality of life over time of these patients.

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Acknowledgments

The authors thank the Dutch Anorectal Malformation Society and the Hirschsprung's Disease Society for their collaboration.

Author information

Authors and Affiliations

  1. Pediatric Surgical Center of Amsterdam, Emma Children's Hospital AMC/VU Medical Center, Amsterdam, The Netherlands

    Esther E. Hartman M.A., Marianne J. G. Hanneman M.A. & Daniel C. Aronson M.D., Ph.D.

  2. Division of Medical Psychology, University of Amsterdam, Amsterdam, The Netherlands

    Esther E. Hartman M.A., Frans J. Oort Ph.D., Mechteld R. Visser Ph.D., Mirjam A. Sprangers Ph.D. & Marianne J. G. Hanneman M.A.

  3. Department of Pediatric Surgery, University Hospital of Groningen, Groningen, The Netherlands

    Zacharias J. de Langen M.D., Ph.D.

  4. Department of Pediatric Surgery, University Hospital of Maastricht, Maastricht, The Netherlands

    L. W. Ernest van Heurn M.D., Ph.D.

  5. Department of Pediatric Surgery, University Hospital of Nijmegen, Nijmegen, The Netherlands

    Paul N. M. A. Rieu M.D., Ph.D.

  6. Department of Pediatric Surgery, University Hospital of Rotterdam, Rotterdam, The Netherlands

    Gerard C. Madern M.D.

  7. Department of Pediatric Surgery, University Hospital of Utrecht, Utrecht, The Netherlands

    David C. van der Zee M.D., Ph.D.

  8. Patient Society of Anorectal Malformations, Nijverdal, The Netherlands

    Nic Looyaard

  9. Patient Society of Hirschsprung's Disease, Hilversum, The Netherlands

    Marina van Silfhout-Bezemer M.D.

  10. Academic Medical Centre, University of Amsterdam, Building J4, P.O. Box 22660, 1100 DD, Amsterdam, The Netherlands

    Esther E. Hartman M.A.

Authors
  1. Esther E. Hartman M.A.
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  2. Frans J. Oort Ph.D.
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  3. Mechteld R. Visser Ph.D.
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  4. Mirjam A. Sprangers Ph.D.
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  5. Marianne J. G. Hanneman M.A.
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  6. Zacharias J. de Langen M.D., Ph.D.
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  7. L. W. Ernest van Heurn M.D., Ph.D.
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  8. Paul N. M. A. Rieu M.D., Ph.D.
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  9. Gerard C. Madern M.D.
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  10. David C. van der Zee M.D., Ph.D.
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  11. Nic Looyaard
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  12. Marina van Silfhout-Bezemer M.D.
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  13. Daniel C. Aronson M.D., Ph.D.
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Corresponding author

Correspondence to Esther E. Hartman M.A..

Additional information

Supported by The Netherlands Digestive Diseases Foundation (MLDS) and Doctors for Children.

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Hartman, E.E., Oort, F.J., Visser, M.R. et al. Explaining Change Over Time in Quality of Life of Adult Patients With Anorectal Malformations or Hirschsprung's Disease. Dis Colon Rectum 49, 96–103 (2006). https://doi.org/10.1007/s10350-005-0216-4

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  • DOI: https://doi.org/10.1007/s10350-005-0216-4

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