Factors affecting quality of life of children and adolescents with anorectal malformations or hirschsprung disease

Journal of Pediatric Gastroenterology and Nutrition

Volumn 47, Issue 4, 2008, Pages 463-471

  Hartman, Esther E ^a,b,j   Oort, Frans J ^b   Sprangers, Mirjam A G ^b   Hanneman, Marianne J G ^a,b   Van Heurn, L W Ernest ^c   De Langen, Zacharias J ^d   Madern, Gerard C ^e   Rieu, Paul N M A ^f   Van Der Zee, David C ^g   Looyaard, Nic ^h   Van Silfhout Bezemer, Marina ⁱ   Aronson, Daniel C ^a  

^a Pediatric Surgical Centre of Amsterdam   (Netherlands)

^b UNIVERSITY OF AMSTERDAM   (Netherlands)

^c MAASTRICHT UNIVERSITY MEDICAL CENTER   (Netherlands)

^d UNIVERSITY MEDICAL CENTER GRONINGEN   (Netherlands)

^e ERASMUS MEDICAL CENTER   (Netherlands)

^f RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

^g UNIVERSITY MEDICAL CENTER UTRECHT   (Netherlands)

^h Patient Societies of Anorectal Malformations   (Netherlands)

ⁱ Nijverdal and Hilversum   (Netherlands)

^j TILBURG UNIVERSITY   (Netherlands)

more..

Author keywords

Anorectal malformations; Hirschsprung disease; Quality of life

Indexed keywords

ACADEMIC ACHIEVEMENT; ADOLESCENT; AGE DISTRIBUTION; ANORECTAL MALFORMATION; ARTICLE; ATHLETIC PERFORMANCE; CHILD; COMPETENCE; CONTROLLED STUDY; DEFECATION; DEMOGRAPHY; DISEASE SEVERITY; FEMALE; FUNCTIONAL STATUS; HIRSCHSPRUNG DISEASE; HUMAN; MAJOR CLINICAL STUDY; MALE; MEDICAL RECORD; MENTAL FUNCTION; PHYSICAL CAPACITY; PREDICTION; PRIORITY JOURNAL; PSYCHOSOCIAL DISORDER; QUALITY OF LIFE; QUESTIONNAIRE; SCHOOL CHILD; SELF CONCEPT; SELF ESTEEM; SEX DIFFERENCE; AGE; ANAL CANAL; CONGENITAL MALFORMATION; MULTIPLE MALFORMATION SYNDROME; PATHOPHYSIOLOGY; PSYCHOLOGICAL ASPECT; RECTUM; RISK FACTOR; SICKNESS IMPACT PROFILE;

ABNORMALITIES, MULTIPLE; ADOLESCENT; AGE FACTORS; ANAL CANAL; CHILD; FEMALE; HIRSCHSPRUNG DISEASE; HUMANS; MALE; QUALITY OF LIFE; QUESTIONNAIRES; RECTUM; RISK FACTORS; SELF CONCEPT; SEX FACTORS; SICKNESS IMPACT PROFILE;

EID: 59649125129     PISSN: 02772116     EISSN: None     Source Type: Journal    
DOI: 10.1097/mpg.0b013e31815ce545     Document Type: Article

References (47)

1. Poley MJ, Stolk EA, Tibboel D, et al. Short term and long term health related quality of life after congenital anorectal malformations and congenital diaphragmatic hernia. Arch Dis Child 2004;89: 836-841.
2. Diseth TH, Emblem R. Somatic function, mental health, and psychosocial adjustment of adolescents with anorectal anomalies. J Pediatr Surg 1996;31:638-43.
3. Goyal A, Williams JM, Kenny SE, et al. Functional outcome and quality of life in anorectal malformations. J Pediatr Surg 2006; 41:318-22.
4. Athanasakos E, Starling J, Ross F, et al. An example of psychological adjustment in chronic illness: Hirschsprung's disease. Pediatr Surg Int 2006;22:319-25.
5. Eiser C, Mohay H, Morse R. The measurement of quality of life in young children. Child Care Health Dev 2000;26:401-14.
6. Aaronson NK, Meyerowitz BE, Bard M, et al. Quality of life research in oncology-past achievements and future priorities. Cancer 1991;67:339-43.
7. World Health Organization. Preamble to the Constitution of the World Health Organization as Adopted by the International Health Conference. Geneva: World Health Organization; 1948.
8. Ravens-Sieberer U, Bullinger M. Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results. Qual Life Res 1998; 7:399-407.
9. Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Arch Dis Child 2001;84:205-11.
10. Stein REK, Jessop DJ. What diagnosis does not tell-the case for a noncategorical approach to chronic illness in childhood. Soc Sci Med 1989;29:769-78.
11. Ong NT, Beasley SW. Long-term continence in patients with high and intermediate anorectal anomalies treated by sacroperineal (Stephens) rectoplasty. J Pediatr Surg 1991;26:44-8.
12. Ludman L, Spitz L, Kiely EM. Social and emotional impact of fecal incontinence after surgery for anorectal abnormalities. Arch Dis Child 1994;71:194-200.
13. Smith KW, Avis NE, Assmann SF. Distinguishing between quality of life and health status in quality of life research: a meta-analysis. Qual Life Res 1999;8:447-59.
14. Amir M, Roziner I, Knoll A, et al. Self-efficacy and social support as mediators in the relation between disease severity and quality of life in patients with epilepsy. Epilepsia 1999;40:216-24.
15. Rosen RC, Contrada RJ, Gorkin L, et al. Determinants of perceived health in patients with left ventricular dysfunction: a structural modeling analysis. Psychosomat Med 1997;59:193-200.
16. Sullivan MD, Kempen GI, Van Sonderen E, et al. Models of healthrelated quality of life in a population of community-dwelling Dutch elderly. Qual Life Res 2000;9:801-10.
17. Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA1995;273:59- 65.
18. Testa MA, Simonson DC. Assessment of quality of life outcomes. N Engl J Med 1996;334:835-40.
19. Patrick DL, Deyo RA. Generic and disease-specific measures in assessing health status and QL. Med Care 1989;27:s217-32.
20. Vogels T, Verrips GHW, Koopman HM, et al. TACQOL Manual Parent and Child Form. Leiden, the Netherlands: Leiden Center for Child Health and Paediatrics; 2000.
21. Vogels T, Bruil J, Koopman HM, et al. TACQOL CF 12-15 Manual. Leiden, the Netherlands: Leiden Center for Child Health and Paediatrics; 2004.
22. Vogels T, Verrips GH, Verloove-Vanhorick SP, et al. Measuring health-related quality of life in children: the development of the TACQOL parent form. Qual Life Res 1998;7:457-66.
23. Verrips GHW, Vogels TGC, Verloove-Vanhorick SP, et al. Health related quality of life measure for children-the TACQOL. J Appl Ther 1998:357-60.
24. Hanneman MJG, Sprangers MA, De Mik EL, et al. Quality of life in patients with anorectal malformations or Hirschsprung's disease: the development of a disease-specific questionnaire. Dis Colon Rectum 2001;44:1650-60.
25. Trajanovska M, Catto-Smith AG. Quality of life measures for fecal incontinence and their use in children. J Gastroenterol Hepatol2005;20: 919-28.
26. Veerman JW, StraathofMAE, Treffers DA, et al. Manual of the Selfperception Scale for Children [in Dutch]. Lisse, the Netherlands: Swets & Zeitlinger; 1997.
27. Treffers DA, Goedhart AW, Veerman JW, et al. Manual of the Selfperception Scale for Adolescents [in Dutch]. Lisse, the Netherlands: Swets & Zeitlinger; 2002.
28. Harter S. Manual for the Self-perception Profile of Children. Denver: University of Denver; 1985.
29. Harter S. Manual for the Self-perception Profile of Adolescents. Denver: University of Denver; 1986.
30. Aasland A, Diseth TH. Can the Harter Self-Perception Profile for Adolescents (SPPA) be used as an indicator of psychosocial outcome in adolescents with chronic physical disorders? Eur Child Adolesc Psychiatry 1999;8:78-85.
31. Hassink EA, Rieu PN, Hamel BC, et al. Additional congenital defects in anorectal malformations. Eur J Pediatr 1996;155:477-82.
32. Bollen KA. Structural Equations with Latent Variables. New York: Wiley; 1989.
33. Browne MW, Cudeck R. Alternative ways of assessing model fit. Sociol Methods Res 1992;21:230-58.
34. Joreskog KG, Sorbom D. LISREL 8 User's Guide. Chicago: Scientific Software International; 1996.
35. Cohen J. Statistical Power Analysis for the Behavioral Sciences. Mahwah, NJ: Lawrence Erlbaum Associates; 1988.
36. Bai Y, Yuan Z, Wang W, et al. Quality of life of children with fecal incontinence after surgically corrected anorectal malformations. J Pediatr Surg 2000;35:462-4.
37. Ditesheim JA, Templeton JM Jr. Short-term versus long-term quality of life in children following repair of high imperforate anus. J Pediatr Surg 1987;22:581-7.
38. Hartman EE, Oort FJ, Aronson DC, et al. Explaining change in quality of life of children and adolescents with anorectal malformations or Hirschsprung disease. Pediatrics 2007;119:e374-83.
39. Hartman EE, Oort FJ, Aronson DC, et al. Critical factors affecting quality of life of adult patients with anorectal malformations or Hirschsprung's disease. Am J Gastroenterol 2004;99:907-13.
40. Hartman EE, Oort FJ, Visser MR, et al. Explaining change over time in quality of life of adult patients with anorectal malformations or Hirschsprung's disease. Dis Colon Rectum 2006;49:96-103.
41. Loening-Baucke V. Fecal incontinence in children. Am Fam Physician 1997;55:2229-38.
42. Van Kuyk EM, Brugman-Boezeman AT, Wissink-Essink M, et al. Defecation problems in children with Hirschsprung's disease: a prospective controlled study of a multidisciplinary behavioral treatment. Acta Paediatr 2001;90:1153-9.
43. Van Kuyk EM, Wissink-Essink M, Brugman-Boezeman AT, et al. Multidisciplinary behavioral treatment of defecation problems: a controlled study in children with anorectal malformations. J Pediatr Surg 2001;36:1350-6.
44. Pena A, Hong A. Advances in the management of anorectal malformations. Am J Surg 2000;180:370-6.
45. Kiely EM, Pena A. Anorectal malformations. In: O'Neill JA (ed). Pediatric Surgery. 5th ed. St Louis: Mosby-Year Book; 1986. pp. 1425-48.
46. Zaslavsky C, Loening-Baucke V. Anorectal manometric evaluation of children and adolescents postsurgery for Hirschsprung's disease. J Pediatr Surg 2003;38:191-5.
47. Teitelbaum DH, Coran AG, Weitzman JJ, et al. Hirschsprung's disease and related neuromuscular disorders of the intestine. In: O'Neill JA, Rowe MI, Grosfield JL, et al. (eds). Pediatric Surgery.5th ed. St Louis: Mosby-Year Book; 1998. pp. 1381-424.