- Anorectal malformations and hirschsprung disease
- Functional and psychosocial challenges
L.W.E. van Heurn
A.F.W. van der Steeg
- Award date
- 11 October 2017
- Number of pages
- Document type
- PhD thesis
- Faculty of Medicine (AMC-UvA)
The title of this thesis “Anorectal malformations and Hirschsprung disease: functional and psychosocial challenges” reflects on the patients, their parents and their doctors. Within this manuscript we have addressed all these different concepts. We exposed some not often investigated aspects, such as QoL and anxiety of parents of patients with an anorectal malformation or Hirschsprung disease. Anxiety among mothers of newborn children with an anorectal malformation or Hirschsprung disease is an important aspect that we need not to forget. Also the ongoing parental stress during the first years of parenting a child, with one of these disorders, is something we need to keep in mind. And if necessary we need to offer psychological support to parents.
And also we proved that a multidisciplinary approach for these patients is the only way to address all
complaints that can influence the (health-related) QoL of the patients and their parents. These patients can develop for example sexual and urological problems during their life. Also psychological problems can manifest. Our patients need (transitional) outpatient care that can provide in all these aspects. With this thesis we have addressed that, both for parents and patients, functional and psychosocial problems can occur. In the future we want to focus even more on interventions that can lead to a better (health-related) QoL of both parents and patients.
Thesis (complete) (Embargo up to and including 11 April 2018)
Chapter 5: Persistent parental stress in parents caring for a young child with an Anorectal Malformation or Hirschsprung disease (Embargo up to and including 11 April 2018)
Chapter 6: Long-term outcome and quality of life in patients with near-total colonic aganglionosis in the Netherlands (Embargo up to and including 11 April 2018)
Chapter 8: Predicting sexual problems in young adults with an Anorectal Malformation or Hirschsprung disease (Embargo up to and including 11 April 2018)
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