title: Transition from childhood to adolescence: Quality of life changes 6 years later in patients born with anorectal malformations.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Psychology, La Sapienza, University of Rome, Via dei Marsi, 78, 00185, Rome, Italy, caterina.grano@uniroma1.it.
authors.forename: Caterina
authors.initials: C
authors.lastname: Grano
authors.forename: S
authors.initials: S
authors.lastname: Bucci
authors.forename: D
authors.initials: D
authors.lastname: Aminoff
authors.forename: F
authors.initials: F
authors.lastname: Lucidi
authors.forename: C
authors.initials: C
authors.lastname: Violani
mesh_terms: D000293:Adolescent; D000367:Age Factors; D001003:Anal Canal / Q000002:abnormalities*; D000071056:Anorectal Malformations; D001006:Anus, Imperforate / Q000523:psychology; D002648:Child; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D011788:Quality of Life; D012007:Rectum / Q000002:abnormalities*; D011795:Surveys and Questionnaires; D013997:Time Factors