Short term and long term health related quality of life after congenital anorectal malformations and congenital diaphragmatic hernia

M J Poley, E A Stolk, D Tibboel, J C Molenaar, J J V Busschbach, M J Poley, E A Stolk, D Tibboel, J C Molenaar, J J V Busschbach

Abstract

Aims: To examine short term and long term health related quality of life (HRQoL) of survivors of congenital anorectal malformations (ARM) and congenital diaphragmatic hernia (CDH), and to compare these patients' HRQoL with that of the general population.

Methods: HRQoL was measured in 286 ARM patients and 111 CDH patients. All patients were administered a symptom checklist and a generic HRQoL measure. For the youngest children (aged 1-4) the TAIQOL (a preliminary version of the TAPQOL) was used, for the other children (aged 5-15) the TACQOL questionnaire, and for adults (aged >16) the SF-36.

Results: As appeared from the symptom checklists, many patients remained symptomatic into adulthood. In the youngest ARM patients (aged 1-4 years), generic HRQoL was severely affected, but the older ARM patients showed better HRQoL. In the CDH patients, the influence of symptoms on HRQoL seemed less profound. The instruments we used revealed little difference between adults treated for ARM or CDH and the general population.

Conclusions: These results show that for two neonatal surgical procedures, improved survival does not come at the expense of poor HRQoL in adults. Even though there is considerable suffering in terms of both morbidity and mortality in the youngest group, the ultimate prognosis of survivors of the two studied congenital malformations is favourable. This finding can be used to reassure parents of patients in need of neonatal surgery for one of these conditions about the prospects for their child.

References

    1. East Afr Med J. 1997 Feb;74(2):85-8
    1. Qual Life Res. 1997 Jan;6(1):43-53
    1. Qual Life Res. 1998 Jul;7(5):387-97
    1. Qual Life Res. 1998 Jul;7(5):457-65
    1. J Clin Epidemiol. 1998 Nov;51(11):1055-68
    1. Child Abuse Negl. 1999 Aug;23(8):759-70
    1. J Pediatr Surg. 2000 Apr;35(4):588-92
    1. Int J Cancer Suppl. 1999;12:46-51
    1. Int J Cancer Suppl. 1999;12:58-64
    1. Pharmacoeconomics. 2000 Jan;17(1):13-35
    1. Eur J Pediatr Surg. 2000 Feb;10(1):3-7
    1. J Clin Oncol. 2000 Sep 15;18(18):3280-7
    1. Pediatrics. 2000 Dec;106(6):1422-8
    1. Spine (Phila Pa 1976). 2000 Dec 15;25(24):3130-9
    1. Qual Life Res. 2000;9(8):961-72
    1. J Child Psychol Psychiatry. 2001 Jul;42(5):661-7
    1. J Pediatr Surg. 2001 Oct;36(10):1471-8
    1. Semin Pediatr Surg. 2001 Nov;10(4):222-9
    1. Am J Perinatol. 2000;17(7):345-56
    1. J Pediatr Surg. 2002 Sep;37(9):1245-52
    1. J Clin Pathol. 2004 Mar;57(3):309-11
    1. Surgery. 1974 Nov;76(5):754-63
    1. BMJ. 1988 Jul 30;297(6644):344-6
    1. Child Abuse Negl. 1989;13(3):427-37
    1. J Pediatr Surg. 1991 Sep;26(9):1058-63
    1. J Pediatr Psychol. 1991 Oct;16(5):557-68
    1. J Trop Pediatr. 1992 Feb;38(1):34-40
    1. Pediatrics. 1992 Nov;90(5):692-6
    1. J Pediatr Surg. 1993 Jan;28(1):48-52
    1. Am J Dis Child. 1993 Mar;147(3):279-83
    1. J Pediatr Surg. 1994 Jun;29(6):773-6
    1. J Pediatr Surg. 1994 Jun;29(6):777-80
    1. JAMA. 1995 Jan 4;273(1):59-65
    1. J Trop Pediatr. 1995 Feb;41(1):43-6
    1. Semin Pediatr Surg. 1995 Feb;4(1):35-47
    1. J Pediatr Surg. 1995 Mar;30(3):495-9
    1. Lancet. 1996 Jul 13;348(9020):75-82
    1. Clin Perinatol. 1996 Dec;23(4):873-87
    1. Am J Respir Crit Care Med. 1997 Jan;155(1):174-80
    1. Subst Use Misuse. 1998 Jun;33(7):1461-80

Source: PubMed

Sponsors and Collaborators

Medical Conditions

Drug Interventions

3
Subscribe