Quality of life and disease-specific functioning of patients with anorectal malformations or Hirschsprung's disease: A review

Archives of Disease in Childhood

Volumn 96, Issue 4, 2011, Pages 398-406

  Hartman, E Esther ^a   Oort, F J ^b   Aronson, D C ^c   Sprangers, M A ^b  

^a TILBURG UNIVERSITY   (Netherlands)

^b UNIVERSITY OF AMSTERDAM   (Netherlands)

^c RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

[No Author keywords available]

Indexed keywords

ANORECTAL MALFORMATION; CONSTIPATION; FECES INCONTINENCE; HIRSCHSPRUNG DISEASE; HUMAN; INTESTINE FUNCTION; PREVALENCE; PRIORITY JOURNAL; PSYCHOSOCIAL DISORDER; QUALITY OF LIFE; REVIEW; SOCIAL PSYCHOLOGY;

ADOLESCENT; AGE FACTORS; ANUS, IMPERFORATE; CHILD; CHILD, PRESCHOOL; CONSTIPATION; FECAL INCONTINENCE; FEMALE; HIRSCHSPRUNG DISEASE; HUMANS; INFANT; MALE; QUALITY OF LIFE;

EID: 79953166849     PISSN: 00039888     EISSN: 14682044     Source Type: Journal    
DOI: 10.1136/adc.2007.118133     Document Type: Review

References (51)

1. deVries PA, Cox KL. Surgery of anorectal anomalies. Surg Clin North Am 1985;65:1139-69.
2. Teitelbaum DH, Coran AG, Weitzman JJ. Pediatric surgery. In: O'Neill JA, Grosfeld JL, Fonkalsrud EW, et al, eds. Hirschsprung's disease and related neuromuscular disorders of the intestine. 5th edn. St Louis, Missouri, USA: Mosby-Year Book, 1998:1381-424.
3. Diseth TH, Egeland T, Emblem R. 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 1998;33:468-75. (Pubitemid 28160280)
4. Kamm MA. Faecal incontinence: common and treatable. Med J Aust 2002;176:47-8. (Pubitemid 34116237)
5. Rintala R, Mildh L, Lindahl H. Fecal continence and quality of life in adult patients with an operated low anorectal malformation. J Pediatr Surg 1992;27:902-5.
6. Rintala R, Mildh L, Lindahl H. Fecal continence and quality of life foradult patients with an operated high or intermediate anorectal malformation. J Pediatr Surg 1994;29:777-80. (Pubitemid 24191362)
7. Rintala R, Lindahl H, Marttinen E, et al. Constipation is a major functional complication after internal sphincter-saving posterior sagittal anorectoplasty for high and intermediate anorectal malformations. J Pediatr Surg 1993;28:1054-8. (Pubitemid 23246203)
8. Hassink EA, Rieu PN, Brugman AT, et al. Quality of life after operatively corrected high anorectal malformation: a long-term follow-up study of patients aged 18 years and older. J Pediatr Surg 1994;29:773-6. (Pubitemid 24191361)
9. Hassink EA, Rieu PN, Severijnen RS, et al. Are adults content or continent after repair for high analatresia? A long-term follow-up study in patients 18 years of age and older. Ann Surg 1993;218:196-200. (Pubitemid 23229147)
10. 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;89:836-41. (Pubitemid 39165952)
11. Diseth TH, Emblem R. Somatic function, mental health, and psychosocial adjustment of adolescents with anorectal anomalies. J Pediatr Surg 1996;31:638-43. (Pubitemid 26152578)
12. Bai Y, Chen H, Hao J, et al. Long-term outcome and quality of life after the Swenson procedure for Hirschsprung's disease. J Pediatr Surg 2002;37:639-42. (Pubitemid 34293107)
13. Diseth TH, BJørnland K, Nøvik TS, et al. Bowel function, mental health, and psychosocial function in adolescents with Hirschsprung's disease. Arch Dis Child 1997;76:100-6. (Pubitemid 27086875)
14. 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. (Pubitemid 39090222)
15. Quality of life and clinical trials (Editorial). Lancet 1995;346:1-2.
16. Constitution of the World Health Organization. Geneva: WHO, 1947.
17. Aaronson NK, Meyerowitz BE, Bard M, et al. Quality of life research in oncology. Past achievements and future priorities. Cancer 1991;67:839-43.
18. Siegrist J, Junge A. Conceptual and methodological problems in research on the quality of life in clinical medicine. Soc Sci Med 1989;29:463-8. (Pubitemid 19170982)
19. Cella DF, Tulsky DS. Measuring quality of life today: methodological aspects. Oncology (Williston Park, NY) 1990;4:29-38; discussion 69.
20. Eiser C, Mohay H, Morse R. The measurement of quality of life in young children. Child Care Health Dev 2000;26:401-14.
21. Wallander JL, Schmitt M, Koot HM. Quality of life measurement in children and adolescents: issues, instruments, and applications. J Clin Psychol 2001;57:571-85. (Pubitemid 32247040)
22. Engum SA, Grosfeld JL. Long-term results of treatment of Hirschsprung's disease. Semin Pediatr Surg 2004;13:273-85. (Pubitemid 40127288)
23. 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.
24. Amae S, Hayashi J, Funakosi S, et al. Postoperative psychological status of children with anorectal malformations. Pediatr Surg Int 2008;24:293-8.
25. 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.
26. Bai Y, Yuan Z, Wang W, et al. Quality of life for children with fecal incontinence after surgically corrected anorectal malformation. J Pediatr Surg 2000;35:462-4. (Pubitemid 30131612)
27. Brandt ML, Daigneau C, Graviss EA, et al. Validation of the Baylor Continence Scale in children with anorectal malformations. J Pediatr Surg 2007;42:1015-21; discussion 1021.
28. Diseth TH, Emblem R, Solbraa IB, et al. A psychosocial follow-up of ten adolescents with low anorectal malformation. Acta Paediatr 1994;83:216-21. (Pubitemid 24079264)
29. Funakosi S, Hayashi J, Kamiyama T, et al. Psychosocial liaison-consultation for the children who have undergone repair of imperforate anus and Hirschsprung disease. J Pediatr Surg 2005;40:1156-62. (Pubitemid 40966668)
30. Ginn-Pease ME, King DR, Tarnowski KJ, et al. Psychosocial adjustment and physical growth in children with imperforate anus or abdominal wall defects. J Pediatr Surg 1991;26:1129-35.
31. Goyal A, Williams JM, Kenny SE, et al. Functional outcome and quality of life in anorectal malformations. J Pediatr Surg 2006;41:318-22. (Pubitemid 43233846)
32. Hamid CH, Holland AJ, Martin HC. Long-term outcome of anorectal malformations: the patient perspective. Pediatr Surg Int 2007;23:97-102. (Pubitemid 46175211)
33. 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.
34. Hartman EE, Oort FJ, Sprangers MA, et al. Factors affecting quality of life of children and adolescents with anorectal malformations or Hirschsprung disease. J Pediatr Gastroenterol Nutr 2008;47:463-71.
35. Hartman EE, Oort FJ, Visser MR, et al. Explaining change overtime in quality of life of adult patients with anorectal malformations or Hirschsprung's disease. Dis Colon Rectum 2006;49:96-103. (Pubitemid 41830661)
36. Iwai N, Deguchi E, Kimura O, et al. Social quality of life foradult patients with anorectal malformations. J Pediatr Surg 2007;42:313-17. (Pubitemid 46161551)
37. Ludman L, Spitz L. Psychosocial adjustment of children treated for anorectal anomalies. J Pediatr Surg 1995;30:495-9.
38. Ludman L, Spitz L, Kiely EM. Social and emotional impact of faecal incontinence after surgery for anorectal abnormalities. Arch Dis Child 1994;71:194-200. (Pubitemid 24298262)
39. Ludman L, Spitz L, Tsuji H, et al. Hirschsprung's disease: functional and psychological follow up comparing total colonic and rectosigmoid aganglionosis. Arch Dis Child 2002;86:348-51. (Pubitemid 34478231)
40. Mills JL, Konkin DE, Milner R, et al. Long-term bowel function and quality of life in children with Hirschsprung's disease. J Pediatr Surg 2008;43:899-905. (Pubitemid 351657551)
41. Moore SW, Albertyn R, Cywes S. Clinical outcome and long-term quality of life after surgical correction of Hirschsprung's disease. J Pediatr Surg 1996;31:1496-502. (Pubitemid 26383144)
42. Ojmyr-Joelsson M, Nisell M, Frenckner B, et al. High and intermediate imperforate anus: psychosocial consequences among school-aged children. J Pediatr Surg 2006;41:1272-8. (Pubitemid 43977775)
43. Pini Prato A, Gentilino V, Giunta C, et al. Hirschsprung's disease: 13 years' experience in 112 patients from a single institution. Pediatr Surg Int 2008;24:175-82.
44. Stolk EA, Busschbach JJ, Vogels T. Performance of the EuroQol in children with imperforate anus. Qual Life Res 2000;9:29-38. (Pubitemid 30670647)
45. Tarnowski KJ, King DR, Green L, et al. Congenital gastrointestinal anomalies: psychosocial functioning of children with imperforate anus, gastroschisis, and omphalocele. J Consult Clin Psychol 1991;59:587-90.
46. Diseth TH. Dissociation following traumatic medical treatment procedures in childhood: a longitudinal follow-up. Dev Psychopathol 2006;18:233-51. (Pubitemid 43362224)
47. Hanneman MJ, Sprangers MA, De Mik EL, et al. Quality of life in patients with anorectal malformation or Hirschsprung's disease: development of a disease-specific questionnaire. Dis Colon Rectum 2001;44:1650-60. (Pubitemid 33126984)
48. Hedges L, Olkin I. Statistical methods for meta-analysis. New York, USA: Academic Press, 1985.
49. Wolf FM. Meta-analysis: quantitative methods for research synthesis. Beverly Hills, California, USA: Sage Publications, 1986.
50. Cohen J. Statistical power analysis for the behavioral sciences. Mahwah, New Jersey, USA: Lawrence Erlbaum Associates Publishers, 1988.
51. Weilin W, Zheng, L, Huizhen, W, et al. Comprehensive assessment of long term postoperative continence in pediatric imperforate anus. Chin Med J 1991;104:949-53.