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  • 1.
    Burström, Kristina
    et al.
    Department of Learning Informatics Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm, Sweden; Department of Public Health Sciences, Equity and Health Policy Research Group, Karolinska Institutet, Stockholm, Sweden; Stockholm County Council, Health Care Services, Stockholm, Sweden.
    Bartonek, Å
    Department of Women’s and Children’s Health, Karolinska Institutet, Stockholm, Sweden; Astrid Lindgren’s Children’s Hospital, Karolinska University Hospital, Stockholm, Sweden.
    Broström, EW
    Department of Women’s and Children’s Health, Karolinska Institutet, Stockholm, Sweden;Astrid Lindgren’s Children’s Hospital, Karolinska University Hospital, Stockholm, Sweden.
    Sun, S
    Department of Learning Informatics Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm, Sweden; Department of Public Health Sciences, Equity and Health Policy Research Group, Karolinska Institutet, Stockholm, Sweden; Stockholm County Council, Health Care Services, Stockholm, Sweden.
    Egmar, Ann-Charlotte
    The Swedish Red Cross University College. Department of Learning Informatics Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm, Sweden.
    EQ-5D-Y as a health-related quality of life measure in children and adolescents with functional disability in Sweden: testing feasibility andvalidity2014In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 103, no 4, p. 426-435Article in journal (Refereed)
  • 2.
    Kästel, Anne
    et al.
    Astrid Lindgren Childrens Hosp, Paediat Oncol Unit, Stockholm.
    Enskär, Karin
    Jönköping Univ, Sch Hlth Sci, Dept Nursing Sci.
    Parental views on participation in childhood cancer care2007In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 49, no 4, p. 557-557Article in journal (Other academic)
  • 3.
    Nisell, Margret
    Karolinska institutet.
    Samverkan Barnsomatik och Barn- och ungdomspsykiatri vid Astrid Lindgrens barnsjukhus1999Report (Other academic)
  • 4.
    Wigander, Helena
    et al.
    Karolinska Institutet / Karolinska University Hospital.
    Nisell, Margret
    The Swedish Red Cross University College, Department of Health Sciences. Karolinska Institutet.
    Frenckner, Björn
    Karolinska Institutet / Karolinska University Hospital.
    Wester, Tomas
    Karolinska Institutet / Karolinska University Hospital.
    Brodin, Ulf
    Karolinska Institutet.
    Öjmyr-Joelsson, Maria
    Karolinska Institutet / Karolinska University Hospital.
    Quality of life and functional outcome in Swedish children with low anorectal malformations: a follow-up study.2019In: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 35, no 5, p. 583-590Article in journal (Refereed)
    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.

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