Do adult patients with congenital colorectal conditions know their diagnosis?
Anorectal malformations
Hirschsprung disease
Imperforate anus
Total colonic aganglionosis
Journal
Pediatric surgery international
ISSN: 1437-9813
Titre abrégé: Pediatr Surg Int
Pays: Germany
ID NLM: 8609169
Informations de publication
Date de publication:
Dec 2022
Dec 2022
Historique:
accepted:
03
09
2022
pubmed:
22
9
2022
medline:
16
11
2022
entrez:
21
9
2022
Statut:
ppublish
Résumé
Limited research exists about the knowledge that adult patients have about their congenital colorectal diagnosis. This was an IRB approved, prospective study of patients in the Adult Colorectal Research Registry who completed surveys between October 2019 and March 2022. Surveys were administered through REDCap after patients consented to being contacted for research purposes. Patients provided demographic data, which was linked to surgical records, and the diagnoses provided by patients were compared with diagnoses recorded by the original surgeons. One hundred and thirty-one questionnaires were collected, 115 patients had anorectal malformations (ARM) and 16 had Hirschsprung disease (HD). Seven patients who had ARM were unaware that they had an ARM or HD. The type of ARM recorded by the surgeon was unavailable for comparison with the patient's reported diagnosis in four cases. Of the 111 remaining patients with ARM, only 32 of them (29%) knew what their own type of anomaly was. Female patients recalled their diagnosis more often than male patients (42.4% vs 13.5%). All 16 participants with HD correctly identified their diagnosis severity as HD with or without total colonic aganglionosis. The results of this study demonstrate patient's limited understanding of their type of ARM and highlight the urgent need to enhance communication and education strategies, such as issuing patients with medical diagnosis identification cards. It is critical for clinicians to better communicate with patients to ensure that they and their relatives truly understand their precise diagnosis. Adequately informed patients can better advocate for themselves, adhere to treatments and precautionary recommendations and navigate the complexities of transitional care. Consequently they can more effectively manage their lifelong complications.
Identifiants
pubmed: 36129533
doi: 10.1007/s00383-022-05220-0
pii: 10.1007/s00383-022-05220-0
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1723-1728Informations de copyright
© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.
Références
Holschneider HM, Hudson JM (2006) Anorectal malformations in children, Chap. 2. Springer Science and Business Media, Berlin, pp 17–30
Hagens J, Reinshagen K, Tomuschat C (2022) Prevalence of Hirschsprung-associated enterocolitis in patients with Hirschsprung disease. Pediatr Surg Int 38(1):3–24. https://doi.org/10.1007/s00383-021-05020-y
doi: 10.1007/s00383-021-05020-y
pubmed: 34595554
Giuliani S, Grano C, Aminoff D, Schwarzer N, Van De Vorle M, Cretolle C, Haanen M, Brisighelli G, Marzheuser S et al (2017) Transition of care in patients with anorectal malformations: consensus by the ARM-net consortium. J Pediatr Surg. https://doi.org/10.1016/j.jpedsurg.2017.06.008
doi: 10.1016/j.jpedsurg.2017.06.008
pubmed: 28688794
Judd-Glossy L, Ariefdjohan M, Curry S, Ketzer J, Pena A, Bischoff A (2019) A survey of adults with anorectal malformations: perspectives on educational, vocational, and psychosocial experiences. Pediatr Surg Int 35(9):953–961. https://doi.org/10.1007/s00383-019-04508-y
doi: 10.1007/s00383-019-04508-y
pubmed: 31270673
Tofft L, Hoel AT, Håkansson C, Zawadzki A, Gjone H, Øresland T, Bjørnland K et al (2020) Key components of successful transition for adolescents born with anorectal malformations—a Nordic focus group study. Int J Adolesc Med Health. https://doi.org/10.1515/ijamh-2020-0052
doi: 10.1515/ijamh-2020-0052
pubmed: 32887184
Rosen N, Holder M (2022) What parents need to know about Hirschsprung disease. Semin Pediatr Surg. https://doi.org/10.1016/j.sempedsurg.2022.151159
doi: 10.1016/j.sempedsurg.2022.151159
pubmed: 35690467
Crawford CA, Vujakovich CE, Elmore L, Fleming E, Landis BJ, Spoonamore KG, Ware SM (2020) Adolescents with congenital heart defects: a patient and parental perspective of genetic information and genetic risk. Cardiol Young 30(2):219–226. https://doi.org/10.1017/S1047951119002646
doi: 10.1017/S1047951119002646
pubmed: 31983361
pmcid: 8444052
Dore A, De Guise P, Mercier LA (2002) Transition of care to adult congenital heart centres: what do patients know about their heart condition? Can J Cardiol 18(2):141–146
pubmed: 11875583
Moons P, De Volder E, Budts W, De Geest S, Elen J, Waeytens K, Gewillig M (2001) What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education. Heart 86(1):74–80. https://doi.org/10.1136/heart.86.1.74
doi: 10.1136/heart.86.1.74
pubmed: 11410567
pmcid: 1729797
Goossens E, Van Deyk K, Zupancic N, Budts W, Moons P (2014) Effectiveness of structured patient education on the knowledge level of adolescents and adults with congenital heart disease. Eur J Cardiovasc Nurs 13(1):63–70. https://doi.org/10.1177/1474515113479231
doi: 10.1177/1474515113479231
pubmed: 23420323
Aminoff D, La Sala E, Zaccara A (2006) Follow-up of anorectal anomalies: the Italian parents’ and patients’ perspective. J Pediatr Surg 41(4):837–841. https://doi.org/10.1016/j.jpedsurg.2005.12.061
doi: 10.1016/j.jpedsurg.2005.12.061
pubmed: 16567204
Bischoff A, Frischer J, Dickie BH, Peña A (2014) Anorectal malformation without fistula: a defect with unique characteristics. Pediatr Surg Int 30(8):763–766. https://doi.org/10.1007/s00383-014-3527-5
doi: 10.1007/s00383-014-3527-5
pubmed: 24969816
Adler-Milstein J, DesRoches CM, Kralovec P, Foster G, Worzala C, Charles D, Searcy T et al (2015) Electronic health record adoption in US hospitals: progress continues, but challenges persist. Health Aff 34(12):2174–2180. https://doi.org/10.1377/hlthaff.2015.0992
doi: 10.1377/hlthaff.2015.0992
Bischoff A, DeFoor W, VanderBrink B et al (2015) End stage renal disease and kidney transplant in patients with anorectal malformation: is there an alternative route? Pediatr Surg Int 31(8):725–728
doi: 10.1007/s00383-015-3734-8
pubmed: 26143408
Bischoff A, Levitt MA, Peña A (2013) Update on the management of anorectal malformations. Pediatr Surg Int. https://doi.org/10.1007/s00383-013-3355-z
doi: 10.1007/s00383-013-3355-z
pubmed: 23913263
Bischoff A, Frischer J, Knod JL et al (2017) Damaged anal canal as a cause of fecal incontinence after surgical repair for Hirschsprung disease—a preventable and under-reported complication. J Pediatr Surg 52:549–553. https://doi.org/10.1016/j.jpedsurg.2016.08.027
doi: 10.1016/j.jpedsurg.2016.08.027
pubmed: 27624566