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. 2019 May;35(5):583-590.
doi: 10.1007/s00383-018-04431-8. Epub 2019 Feb 7.

Quality of life and functional outcome in Swedish children with low anorectal malformations: a follow-up study

Helena Wigander  1   2 , Margret Nisell  3   4 , Björn Frenckner  5   6 , Tomas Wester  5   6 , Ulf Brodin  7 , Maria Öjmyr-Joelsson  5   6
Affiliations

Quality of life and functional outcome in Swedish children with low anorectal malformations: a follow-up study

Helena Wigander et al. Pediatr Surg Int. 2019 May.

Abstract

Purpose: The aim was to investigate the quality of life and bowel function in children with low anorectal malformations (ARM).

Additional aim: To evaluate the Swedish version the Hirschsprung's Disease/Anorectal Malformation Quality of life Questionnaire (HAQL).

Methods: Forty-four children and their parents were invited to complete the HAQL and the Bowel Function Score (BFS). Healthy children participated as controls and completed the HAQL.

Results: Seventeen children and 18 mothers completed the HAQL. The children reported impaired function in the physical symptom (PH) fecal continence (FC) and laxative diet (LD) domains compared to controls. Compared with their mothers, they reported impaired physical function and more symptoms in the emotional functioning (EMF) and PH domains. 27 families completed the BFS; 63% reported normal bowel function, 33% moderate outcome and one patient, comprising 4%, poor outcome. Evaluation of the HAQL, FC, EMF and PH domains showed no obvious conflicts.

Conclusions: The children did not differ much regarding their QoL, even though they appeared to have impaired bowel function and worse emotional functioning compared to controls. The mothers underestimated their children's physical symptoms and overestimated their emotional functioning. Evaluated domains in the HAQL appear to work as intended, but the questionnaire needs further development.

Keywords: ARM; BFS; HAQL; Low anorectal malformations; QoL; Quality of life.

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Conflict of interest statement

Human and animal rights

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Ethical approval was obtained from the Ethics Review Board in Stockholm, (2008/1706-313).

Informed consent

Informed consent was obtained from all individual participants included in the study.

Conflict of interest

The authors declare that they have no conflict of interest.

Figures

Fig. 1
Fig. 1
Flowchart of participants
Fig. 2
Fig. 2
Comparison of sum scores between children with low ARM (pat) and health controls (contr) by domain FC fecal continence, EMF emotional functioning and PH physical function
See this image and copyright information in PMC

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