Os desfechos de longo prazo da doença de Hirschsprung são geralmente favoráveis. A encoprese pós-operatória e sintomas obstrutivos são relativamente comuns, mas geralmente podem ser controlados com os devidos cuidados.[88]Ambartsumyan L, Patel D, Kapavarapu P, et al. Evaluation and management of postsurgical patient with Hirschsprung disease neurogastroenterology & motility committee: position paper of North American Society of Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN). J Pediatr Gastroenterol Nutr. 2023 Apr 1;76(4):533-46.
https://onlinelibrary.wiley.com/doi/10.1097/MPG.0000000000003717
http://www.ncbi.nlm.nih.gov/pubmed/36720091?tool=bestpractice.com
[89]Langer JC, Rollins MD, Levitt M, et al. Guidelines for the management of postoperative obstructive symptoms in children with Hirschsprung disease. Pediatr Surg Int. 2017 May;33(5):523-6.
http://www.ncbi.nlm.nih.gov/pubmed/28180937?tool=bestpractice.com
[90]Saadai P, Trappey AF, Goldstein AM, et al. Guidelines for the management of postoperative soiling in children with Hirschsprung disease. Pediatr Surg Int. 2019 Aug;35(8):829-34.
http://www.ncbi.nlm.nih.gov/pubmed/31201486?tool=bestpractice.com
O desfecho de longo prazo varia muito dependendo da gravidade da doença e do tipo de cirurgia de abaixamento do cólon realizada.[91]Gunadi, Karina SM, Dwihantoro A. Outcomes in patients with Hirschsprung disease following definitive surgery. BMC Res Notes. 2018 Sep 4;11(1):644.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6123951
http://www.ncbi.nlm.nih.gov/pubmed/30180876?tool=bestpractice.com
Crianças com diagnóstico tardio da doença de Hirschsprung apresentam mais complicações pós-operatórias e podem ter piores desfechos em longo prazo do que pacientes diagnosticados na primeira infância.[92]Stensrud KJ, Emblem R, Bjørnland K. Late diagnosis of Hirschsprung disease--patient characteristics and results. J Pediatr Surg. 2012 Oct;47(10):1874-9.
http://www.ncbi.nlm.nih.gov/pubmed/23084200?tool=bestpractice.com
[93]Pini Prato A, Erculiani M, Novi ML, et al. Delayed diagnosis in Hirschsprung disease. Pediatr Surg Int. 2024 Mar 4;40(1):65.
http://www.ncbi.nlm.nih.gov/pubmed/38436753?tool=bestpractice.com
Sabe-se que pacientes com doença de segmento longo, particularmente aganglionose colônica total, apresentam piores desfechos em longo prazo do que pacientes com doença de segmento curto.[4]Kawaguchi AL, Guner YS, Sømme S, et al. Management and outcomes for long-segment Hirschsprung disease: a systematic review from the APSA outcomes and evidence based practice committee. J Pediatr Surg. 2021 Sep;56(9):1513-23.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8552809
http://www.ncbi.nlm.nih.gov/pubmed/33993978?tool=bestpractice.com
Estudos sugerem que as crianças com doença de Hirschsprung têm a qualidade de vida em longo prazo significativamente comprometida.[94]Allin BSR, Opondo C, Bradnock TJ, et al. Outcomes at five to eight years of age for children with Hirschsprung's disease. Arch Dis Child. 2021 Apr 21;106(5):484-90.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8070639
http://www.ncbi.nlm.nih.gov/pubmed/33139346?tool=bestpractice.com
[95]Dai Y, Deng Y, Lin Y, et al. Long-term outcomes and quality of life of patients with Hirschsprung disease: a systematic review and meta-analysis. BMC Gastroenterol. 2020 Mar 12;20(1):67.
https://www.doi.org/10.1186/s12876-020-01208-z
http://www.ncbi.nlm.nih.gov/pubmed/32164539?tool=bestpractice.com
[96]Svetanoff WJ, Kapalu CL, Lopez JJ, et al. Psychosocial factors affecting quality of life in patients with anorectal malformation and Hirschsprung disease-a qualitative systematic review. J Pediatr Surg. 2022 Mar;57(3):387-93.
http://www.ncbi.nlm.nih.gov/pubmed/34127258?tool=bestpractice.com
A prevalência combinada de incontinência fecal foi de 20% em uma metanálise, e as novas cirurgias não planejadas foram comuns (44%) em um estudo de coorte prospectivo.[94]Allin BSR, Opondo C, Bradnock TJ, et al. Outcomes at five to eight years of age for children with Hirschsprung's disease. Arch Dis Child. 2021 Apr 21;106(5):484-90.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8070639
http://www.ncbi.nlm.nih.gov/pubmed/33139346?tool=bestpractice.com
[95]Dai Y, Deng Y, Lin Y, et al. Long-term outcomes and quality of life of patients with Hirschsprung disease: a systematic review and meta-analysis. BMC Gastroenterol. 2020 Mar 12;20(1):67.
https://www.doi.org/10.1186/s12876-020-01208-z
http://www.ncbi.nlm.nih.gov/pubmed/32164539?tool=bestpractice.com
Sintomas de obstrução e encoprese melhoram com a idade, mas pacientes adultos com doença de Hirschsprung ainda relatam pior função intestinal e qualidade de vida do que controles da mesma idade.[97]Meinds RJ, van der Steeg AFW, Sloots CEJ, et al. Long-term functional outcomes and quality of life in patients with Hirschsprung's disease. Br J Surg. 2019 Mar;106(4):499-507.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6590339
http://www.ncbi.nlm.nih.gov/pubmed/30653654?tool=bestpractice.com
Programas de transição de cuidados e profissionais da saúde para cuidado do adulto familiarizados com o tratamento da doença de Hirschsprung são importantes para preservar a qualidade de vida em pacientes mais velhos.[98]Harrington AW, Gasior AC, Einarsdottir H, et al. Hirschsprung disease: the rise of structured transition and long-term care. J Pediatr Gastroenterol Nutr. 2019 Sep;69(3):306-9.
http://www.ncbi.nlm.nih.gov/pubmed/31107797?tool=bestpractice.com