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Quality of life and functional outcome in Swedish children with low anorectal malformations: a follow-up study.
Karolinska Institutet / Karolinska University Hospital.
Röda Korsets Högskola, Hälsovetenskapliga institutionen. Karolinska Institutet.ORCID-id: 0000-0002-0221-8631
Karolinska Institutet / Karolinska University Hospital.
Karolinska Institutet / Karolinska University Hospital.
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2019 (Engelska)Ingår i: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 35, nr 5, s. 583-590Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

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.

Ort, förlag, år, upplaga, sidor
2019. Vol. 35, nr 5, s. 583-590
Nyckelord [en]
ARM, BFS, HAQL, Low anorectal malformations, QoL, Quality of life
Nationell ämneskategori
Pediatrik
Identifikatorer
URN: urn:nbn:se:rkh:diva-2749DOI: 10.1007/s00383-018-04431-8PubMedID: 30729983OAI: oai:DiVA.org:rkh-2749DiVA, id: diva2:1291547
Tillgänglig från: 2019-02-25 Skapad: 2019-02-25 Senast uppdaterad: 2019-06-24Bibliografiskt granskad

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