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

• Published in: Pediatric surgery international 2019-05, Vol.35 (5), p.583-590
• Main Authors: Wigander, Helena, Nisell, Margret, Frenckner, Björn, Wester, Tomas, Brodin, Ulf, Öjmyr-Joelsson, Maria
• Format: Article
• Language: English
• Subjects: Adolescent; Age; Anorectal Malformations - physiopathology; Anorectal Malformations - psychology; ARM; Attitude to Health; BFS; Child; Child & adolescent psychiatry; Children & youth; Congenital diseases; Constipation; Defecation; Emotions; Families & family life; Fecal incontinence; Feces; Female; Follow-Up Studies; HAQL; Health Surveys - statistics & numerical data; Hospitals; Humans; Laxatives; Low anorectal malformations; Male; Medicin och hälsovetenskap; Medicine; Medicine & Public Health; Mothers - psychology; Original; Original Article; Pediatric Surgery; Pediatrics; QoL; Quality of Life; Questionnaires; Surgery; Surveys and Questionnaires; Sweden; Teenagers
• ISSN: 0179-0358; 1437-9813; 1437-9813
• DOI: 10.1007/s00383-018-04431-8

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.