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黑色素瘤患者的疾病相关知识、信息偏好以及对用于自我检查的YouTube教育视频的评价

Melanoma patients' disease-specific knowledge, information preference, and appreciation of educational YouTube videos for self-inspection.

作者信息

Damude S, Hoekstra-Weebers J E H M, van Leeuwen B L, Hoekstra H J

机构信息

University of Groningen, University Medical Center Groningen, Department of Surgical Oncology, Hanzeplein 1, P.O. Box 30.001, 9700 RB Groningen, The Netherlands.

University of Groningen, University Medical Center Groningen, Wenckebach Institute, Hanzeplein 1, P.O. Box 30.001, 9700 RB Groningen, The Netherlands.

出版信息

Eur J Surg Oncol. 2017 Aug;43(8):1528-1535. doi: 10.1016/j.ejso.2017.06.008. Epub 2017 Jun 24.

Abstract

BACKGROUND

Informing and educating melanoma patients is important for early detection of a recurrence or second primary. This study aimed to investigate Dutch melanoma patients' disease-specific knowledge, and their opinions on information provision and the value of e-Health videos.

METHODS

All AJCC stage I-II melanoma patients in follow-up between March 2015 and March 2016 at a single melanoma center were invited to complete 19 online questions, addressing respondents' characteristics, knowledge on melanoma, and opinions on melanoma-specific information received and the educational YouTube videos.

RESULTS

In total, 100 patients completed the survey (response = 52%); median age was 60 years and 51% were female. Breslow tumor thickness was unknown by 34% and incorrectly indicated by 19%, for presence of ulceration this was 33% and 11%, for mitosis 65% and 14%, and for AJCC stage 52% and 23%, respectively. Only 5% correctly reproduced all four tumor characteristics. Orally delivered information regarding warning signs, severity, treatment possibilities, and importance of self-inspection was clearest for patients, compared to information in the melanoma brochure. According to 77% of patients, YouTube videos regarding self-inspection of the skin and regional lymph nodes had additional value. Altogether, 63% preferred receiving information in multiple ways; 92% orally by their physician, 62% through videos, and 43% through brochures.

CONCLUSIONS

Patients' melanoma-specific knowledge appears to be limited. There is an urgent need for further improvement of providing information and patient education. In addition to oral and written information, e-Health videos seem to be a convenient supplemental and easy accessible method for patient education.

摘要

背景

对黑色素瘤患者进行信息告知和教育对于早期发现复发或第二原发性肿瘤很重要。本研究旨在调查荷兰黑色素瘤患者的疾病相关知识,以及他们对信息提供和电子健康视频价值的看法。

方法

邀请2015年3月至2016年3月在单个黑色素瘤中心接受随访的所有美国癌症联合委员会(AJCC)I-II期黑色素瘤患者完成19个在线问题,这些问题涉及受访者的特征、黑色素瘤知识,以及对所接收的黑色素瘤特定信息和教育性YouTube视频的看法。

结果

共有100名患者完成了调查(回复率=52%);中位年龄为60岁,51%为女性。34%的患者不清楚 Breslow 肿瘤厚度,19%的患者给出错误信息;溃疡情况方面,分别为33%和11%;有丝分裂情况为65%和14%;AJCC分期为52%和23%。只有5%的患者正确说出了所有四项肿瘤特征。与黑色素瘤宣传册中的信息相比,关于警示信号、严重程度、治疗可能性和自我检查重要性的口头信息对患者来说最清晰。77%的患者认为关于皮肤和区域淋巴结自我检查的YouTube视频有额外价值。总体而言,63%的患者更喜欢通过多种方式接收信息;92%希望由医生口头告知,62%希望通过视频,43%希望通过宣传册。

结论

患者的黑色素瘤特定知识似乎有限。迫切需要进一步改进信息提供和患者教育。除了口头和书面信息外,电子健康视频似乎是一种方便的补充方式,且易于患者获取用于患者教育。

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