Abstract
Background/purpose
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.
Similar content being viewed by others
References
Hanneman MJG, Sprangers MAG, De Mik EL (2001) Quality of life in patients with anorectal malformations or Hirschsprung’s disease: the development of a disease-specific questionnaire. Dis Colon Rectum 44:1650–1660. doi:10.1007/BF02234386
Diseth TH, Egeland T, Emblem R (1998) Effects of anal invasive treatment and incontinence on mental health and psychosocial functioning of adolescents with Hirschsprung’s disease and low anorectal anomalies. J Pediatr Surg 33:468–475. doi:10.1016/S0022-3468(98)90090-2
Ludman L, Spitz L (1995) Psychosocial adjustment of children treated for anorectal anomalies. J Pediatr Surg 30:495–499. doi:10.1016/0022-3468(95)90065-9
Hartman EE, Oort FJ, Aronson DC, Sprangers MA (2011) Quality of life and disease-specific functioning of patients with anorectal malformations or Hirschsprung’s disease: a review. Arch Dis Child 96:398–406. doi:10.1136/adc.2007.118133
Grano C, Bucci S, Aminoff D, Lucidi F, Violani C (2013) Quality of life in children and adolescents with anorectal malformation. Pediatr Surg Int 29:925–930. doi:10.1007/s00383-013-3359-8
Hartman EE, Oort FJ, Sprangers MA (2007) Explaining change in quality of life of children and adolescents with anorectal malformations or Hirschsprung disease. Pediatrics 19:374–383. doi:10.1136/adc.2007.118133
Amae S, Hayashi J, Funakosi S, Kamiyama T, Yoshida S, Ueno T, Matsuoka H, Hayashi Y (2008) Postoperative psychological status of children with anorectal malformations. Pediatr Surg Int 24:293–298. doi:10.1007/s00383-007-2077-5
Grano C, Aminoff D, Lucidi F, Violani C (2010) Disease-specific quality of life in children and adults with anorectal malformations. Pediatr Surg Int 26:151–155. doi:10.1007/s00383-009-2541-5
Grano C, Aminoff D, Lucidi F, Violani C (2012) Long-term disease-specific quality of life in children and adolescent patients with ARM. J Pediatr Surg 47:1317–1322. doi:10.1016/j.jpedsurg.2012.01.068
Stam H, Hartman EE, Deurloo JA, Groothoff J, Grootenhuis MA (2006) Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood. J Adolesc Health 39:4–13. doi:10.1016/j.jadohealth.2005.03.011
Law M, King G, King S, Kertoy M, Hurley P, Rosenbaum P, Young N, Hanna S (2006) Patterns of participation in recreational and leisure activities among children with complex physical disabilities. Dev Med Child Neurol 48:337–342. doi:10.1017/S0012162206000740
Shields N, Taylor NF, Dodd KL (2008) Self concept in children with spina bifida compared with typically developing children. Dev Med Child Neurol 50:733–743. doi:10.1111/j.1469-8749.2008.03096.x
Pinquart M (2013) Body image of children adolescents with chronic illness: a meta-analytic comparison with healthy peers. Body Image 10:141–148. doi:10.1016/j.bodyim.2012.10.008
Kostanski M, Gullone E (2007) The impact of teasing on children’s body image. Child Fam Stud 16:307–319. doi:10.1007/s10826-006-9087-0
Rieves L, Cash TF (1996) Social developmental factors and women’s body image attitudes. J Soc Behav Pers 11:63–78
Thompson JK, Coovert MD, Richards KJ, Johnson S, Cattarin J (1995) Development of body image, eating disturbance, and general psychological functioning in female adolescents: covariance structure modelling and longitudinal investigations. Int J Eat Disorder 18:221–236. doi:10.1002/1098-108X(199511)
Haneef Z, Grant ML, Valencia I, Hobdell EF, Kothare SV, Legido A, Khurana D (2010) Correlation between child and parental perceptions of health-related quality of life in epilepsy using the PedsQL.v4.0 measurement model. Pediatr Surg Int 29:925–930. doi:10.1684/epd.2010.0344
Lin CY, Luh WM, Cheng CP, Yang AL, Su CT, Ma HI (2012) Measurement equivalence across child self-reports and parentproxy reports in the chinese version of the pediatric quality of life inventory version 4.0. Child Psychiatry Hum 44:583–590. doi:10.1007/s10578-012-0352-8
Agnihotri K, Awasthi S, Singh U, Chandra H, Thakur S (2010) A study of concordance between adolescent self-report and parentproxy report of health-related quality of life in school-going adolescents. J Psychosom Res 69:525–532. doi:10.1016/j.jpsychores.2010.03.011
Gillen MM (2015) Associations between positive body image and indicators of men’s and women’s mental and physical health. Body Image 13:67–74. doi:10.1016/j.bodyim.2015.01.002
Lau PWC, Lee A, Ransdell LB, Yu CW, Sung RYT (2004) The association between global self-esteem, physical self-concept and actual versus ideal body size rating in Chinese primary school children. Int J Obes 28:314–319. doi:10.1038/sj.ijo.0802520
Spilt J, van Lier P, Leflot G, Onghena P, Colpin H (2014) Children’s social self-concept and internalizing problems: the influence of peers and teachers. Child Dev 85:1248–1256. doi:10.1111/cdev.12181
Allen S, Gilbert P (1995) A social comparison scale: psychometric properties and relationship to psychopathology. Pers Individ Differ 19:293–299. doi:10.1016/0191-8869(95)00086-L
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors declare that they have no conflict of interest.
Rights and permissions
About this article
Cite this article
Grano, C., Bucci, S., Aminoff, D. et al. Transition from childhood to adolescence: Quality of life changes 6 years later in patients born with anorectal malformations. Pediatr Surg Int 31, 735–740 (2015). https://doi.org/10.1007/s00383-015-3736-6
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00383-015-3736-6