Critical factors affecting quality of life of adult patients with anorectal malformations or Hirschsprung's disease

E.E. Hartman, F.J. Oort, D.C. Aronson, M.J. Hanneman, D.C. van der Zee, P.N. Rieu, G.C. Madern, Z.J. de Langen, L.W.E. van Heurn, M. van Silfhout-Bezemer, N. Looyaard, M A G. Sprangers

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Critical factors affecting quality of life of adult patients with anorectal malformations or Hirschsprung's disease.

Hartman EE, Oort FJ, Aronson DC, Hanneman MJ, van der Zee DC, Rieu PN, Madern GC, De Langen ZJ, van Heurn LW, van Silfhout-Bezemer M, Looyaard N, Sprangers MA.

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

OBJECTIVES: The first objective was to compare the quality of life of adult patients with anorectal malformations (ARM) or Hirschsprung's disease (HD) and to compare both groups with healthy people. And the second objective was to examine the factors that affect the quality of life of patients with ARM or HD, using a theoretical model in which patients' background characteristics explain quality of life via mediating disease-specific functioning and psychosocial functioning. METHODS: Three hundred and forty-one patients completed a questionnaire, which assessed sociodemographic characteristics, disease-specific and psychosocial functioning, and quality of life. Clinical factors were extracted from the medical records. RESULTS: Patients with ARM or Hirschsprung's disease did not differ in their quality of life. Compared to healthy people, both patient groups reported more limitations in their "overall" physical quality of life, but only patients with ARM reported impaired quality of life on several specific domains (e.g., physical role-functioning, pain). The model was largely accepted. Most striking were the strong effects of the psychosocial functioning factors in contrast to weak effects of the disease-specific "constipation" and "fecal continence" factors. CONCLUSIONS: The quality of life of patients with ARM or Hirschsprung's disease was found to be comparable. Compared to healthy people, both patient groups encountered "overall" physical health problems, but only patients with ARM reported additional pain and limitations in role functioning due to physical problems. It appeared that psychosocial functioning had the most important effect on the quality of life of patients with ARM or Hirschsprung's disease, while fecal incontinence and constipation had almost no effect on their quality of life.
Original languageEnglish
Pages (from-to)907-913
Number of pages6
JournalAmerican Journal of Gastroenterology
Volume99
Issue number5
DOIs
Publication statusPublished - 1 Jan 2004

Cite this

Hartman, E. E., Oort, F. J., Aronson, D. C., Hanneman, M. J., van der Zee, D. C., Rieu, P. N., Madern, G. C., de Langen, Z. J., van Heurn, L. W. E., van Silfhout-Bezemer, M., Looyaard, N., & Sprangers, M. A. G. (2004). Critical factors affecting quality of life of adult patients with anorectal malformations or Hirschsprung's disease. American Journal of Gastroenterology, 99(5), 907-913. https://doi.org/10.1111/j.1572-0241.2004.04149.x