Abstract：
OBJECTIVE: Limited research exists about the knowledge that adult patients have about their congenital colorectal diagnosis.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
摘要：
目的：关于成年患者对其先天性结直肠诊断的知识的研究有限。
方法：这是IRB批准的，在2019年10月至2022年3月期间完成调查的成人结肠直肠研究注册患者的前瞻性研究。在患者同意为研究目的联系后，通过REDCap进行调查。患者提供了人口统计数据，与手术记录有关，并将患者提供的诊断与原始外科医生记录的诊断进行比较。
结果：收集了一百三十一份问卷，115例患者患有肛门直肠畸形（ARM），16例患有先天性巨结肠病（HD）。7名患有ARM的患者不知道他们患有ARM或HD。外科医生记录的ARM类型无法与4例患者报告的诊断进行比较。在剩下的111名ARM患者中，他们中只有32人(29%)知道他们自己的异常类型是什么。女性患者比男性患者更频繁地回忆他们的诊断（42.4％vs13.5％）。所有16名患有HD的参与者正确地将他们的诊断严重程度确定为伴有或不伴有完全结肠神经节病的HD。
结论：这项研究的结果表明患者对他们的ARM类型的理解有限，并强调迫切需要加强沟通和教育策略，例如向患者发放医疗诊断识别卡。临床医生必须更好地与患者沟通，以确保他们及其亲属真正了解他们的精确诊断。充分知情的患者可以更好地为自己辩护，坚持治疗和预防建议，并应对过渡护理的复杂性。因此，他们可以更有效地管理其终身并发症。
方法：这是IRB批准的，在2019年10月至2022年3月期间完成调查的成人结肠直肠研究注册患者的前瞻性研究。在患者同意为研究目的联系后，通过REDCap进行调查。患者提供了人口统计数据，与手术记录有关，并将患者提供的诊断与原始外科医生记录的诊断进行比较。
结果：收集了一百三十一份问卷，115例患者患有肛门直肠畸形（ARM），16例患有先天性巨结肠病（HD）。7名患有ARM的患者不知道他们患有ARM或HD。外科医生记录的ARM类型无法与4例患者报告的诊断进行比较。在剩下的111名ARM患者中，他们中只有32人(29%)知道他们自己的异常类型是什么。女性患者比男性患者更频繁地回忆他们的诊断（42.4％vs13.5％）。所有16名患有HD的参与者正确地将他们的诊断严重程度确定为伴有或不伴有完全结肠神经节病的HD。
结论：这项研究的结果表明患者对他们的ARM类型的理解有限，并强调迫切需要加强沟通和教育策略，例如向患者发放医疗诊断识别卡。临床医生必须更好地与患者沟通，以确保他们及其亲属真正了解他们的精确诊断。充分知情的患者可以更好地为自己辩护，坚持治疗和预防建议，并应对过渡护理的复杂性。因此，他们可以更有效地管理其终身并发症。
