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Pediatric Surgery International

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Open Access 01-05-2019 | Original Article

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

Authors: Helena Wigander, Margret Nisell, Björn Frenckner, Tomas Wester, Ulf Brodin, Maria Öjmyr-Joelsson

Published in: Pediatric Surgery International | Issue 5/2019

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.

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Title: Quality of life and functional outcome in Swedish children with low anorectal malformations: a follow-up study
Authors: Helena Wigander
Margret Nisell
Björn Frenckner
Tomas Wester
Ulf Brodin
Maria Öjmyr-Joelsson
Publication date: 01-05-2019
Publisher: Springer Berlin Heidelberg
Published in: Pediatric Surgery International / Issue 5/2019
Print ISSN: 0179-0358
Electronic ISSN: 1437-9813
DOI: https://doi.org/10.1007/s00383-018-04431-8

Keynote webinar | Spotlight on medication adherence

Springer Medicine

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

Abstract

Purpose

Additional aim

Methods

Results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Purpose

Additional aim

Methods

Results

Conclusions

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