Pediatric Surgery International

, Volume 31, Issue 8, pp 735–740 | Cite as

Transition from childhood to adolescence: Quality of life changes 6 years later in patients born with anorectal malformations

  • Caterina GranoEmail author
  • S. Bucci
  • D. Aminoff
  • F. Lucidi
  • C. Violani
Original Article



Disease-specific quality of life (QoL) may be more or less relevant when children enter preadolescence/adolescence. Few attentions have been given to development and transition periods. Aim of the present longitudinal study is to evaluate ARM specific changes in QoL and the stability of QoL over 6 years.


Questionnaires were sent to families of the AIMAR Association (in 2007 and in 2013/2014). They included the Hirschsprung’s Disease/ARM QoL Questionnaire (HAQL, [1]). Rank correlations and within group comparisons for the HAQL subscales were conducted analyzing the scores of time 1 vs time 2. Gender effects were tested.


134 parents answered the questionnaires at time 1 and 73 at time 2. Results of the repeated Analyses of Variance indicated improvements in the continence subscales (“Presence of Diarrhea,” “Fecal Continence”). QoL significantly worsened in “Social and Emotional Functioning” and in “Body Image” areas. The analysis of stability of change indicates that QoL scores remain stable, with the exception of the Body Image area.


Despite improvements in the continence areas, parents reported worse levels of QoL in the psychosocial areas, as their child grow. As patients grow, they might have more difficulties in daily and social activities, and feel more frequently ashamed and more dissatisfied with their body.


Disease-specific quality of life (QoL) Fecal continence, transition Changes, body image, follow-up 


Conflict of interest

The authors declare that they have no conflict of interest.


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Copyright information

© Springer-Verlag Berlin Heidelberg 2015

Authors and Affiliations

  • Caterina Grano
    • 1
    • 2
    Email author
  • S. Bucci
    • 1
  • D. Aminoff
    • 2
  • F. Lucidi
    • 3
  • C. Violani
    • 1
  1. 1.Department of PsychologyLa Sapienza, University of RomeRomeItaly
  2. 2.Italian Parents and Patients Organization for Anorectal Malformations (AIMAR)RomeItaly
  3. 3.Department of Developmental and Social PsychologySapienza University of RomeRomeItaly

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