A fountain of knowledge? The quality of online resources for testicular cancer patients

Yeo, Sarah; Eigl, Bernhard J.; Ingledew, Paris-Ann

doi:10.5489/cuaj.6154

Cited by 6 publications

(8 citation statements)

References 27 publications

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“…This is surprising given recent research which found that the average readability level of testicular cancer resources was challenging at a Flesh Kincaid grade level of 11. 24 However this may be explained again by our younger patient demographic, as it has been shown that young adults are the most proficient in technology rich environments and that health literacy skills decline with age. 30,31 Despite the benefits of the internet, about half of the respondents reported that online information did not influence their consultations with health care providers or treatment decisions.…”

Section: Discussionmentioning

confidence: 99%

“…Previous studies have found that metrics commonly used by patients to determine reliability, such as authorship, currency and citations are lacking in many online testicular cancer resources. [24][25][26] This highlights a potential role for health care providers to discuss with patients about how/where they obtain their online information and help them interpret what they find. 27 Although the majority of participants used the internet to search for testicular cancer information, less than half spoke with their provider regarding their findings.…”

Section: Discussionmentioning

confidence: 99%

“…In our recent analysis of 100 testicular cancer websites, we found that prognosis was one of the least accurate topics with over half of the websites labeled incomplete. 24 This shows that there are areas for improvement in online content to meet patient's needs.…”

Section: Discussionmentioning

confidence: 99%

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Caught in the net: Characterizing how testicular cancer patients use the internet as an information source

Yeo

Eigl²,

Chan³

et al. 2021

CUAJ

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Introduction: Over 70% of Canadians who use the internet search for healthcare information online. This is especially true regarding the young adult population. Testicular cancer is the most commonly diagnosed cancer in men aged 15–29. This study characterizes how testicular cancer patients access healthcare information online, and how this influences their clinical encounters and treatment decisions. Methods: From June 2018 to January 2019, a survey consisting of 24 open and close-ended questions was distributed to testicular cancer patients at a tertiary cancer center. Survey results were evaluated using mixed methods analysis. Results: Fifty-nine surveys were distributed, and 44 responses were received. All respondents used the internet regularly and 82% used the internet as a source of information regarding their cancer. The majority followed top hits from Google when selecting websites to view. Frequent topics searched included treatment details and survivorship concerns. Eighty-nine percent of users found online information easy to understand and 94% found it increased their understanding. For 47% of users, the internet did not influence their clinical consultation nor their treatment decision (53%). Conclusions: Most testicular cancer patients in this study are regular internet users and use the internet to search for testicular cancer information. Healthcare providers should recognize this and can play important roles in discussing online findings with patients to assess their background knowledge and expectations, as well as providing guidance on selecting credible online resources. The results of this study can be used to improve patient-physician communication and education.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Caught in the net: Characterizing how testicular cancer patients use the internet as an information source

Yeo

Eigl²,

Chan³

et al. 2021

CUAJ

Self Cite

View full text Add to dashboard Cite

show abstract

“…This is in line with findings for other cancer patient online material. 24,25 Comparison of physician and publicly provided websites revealed important differences. Publicly provided content was more accurate according to the quality of information given.…”

Section: Discussionmentioning

confidence: 99%

Exploring the most visible websites on cutaneous T‐cell lymphoma—revealing limited quality of patient health information on the internet

Özistanbullu

Weber

Kleemann

et al. 2022

Acad Dermatol Venereol

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Background Patients diagnosed with cancer frequently search the Internet for health information. Yet, the quality of CTCL online information has not been investigated so far. Objectives The aim of this study was to identify and assess the most visible websites on CTCL. Methods An Internet search on the top three search engines Google, Yahoo and Bing was performed for the terms ‘cutaneous T‐cell‐lymphoma’, ‘mycosis fungoides’ and ‘Sézary syndrome’. After selecting the most frequented websites suitable for patients' information, we investigated content quality, readability and popularity. Eighty‐nine websites were evaluated for HONcode quality certification, social media popularity, Alexa popularity rank, topicality and readability levels. Furthermore, the websites' content on 13 major topics according to guidelines on CTCL was assessed. Results Twenty‐three (25.8%) websites were HONcode certified. Evaluated websites were difficult to read requiring at least 9 years of US school education to properly understand the information. More than half of all websites (57.3%) have not been updated for three or more years (or did not contain any update information). We found greatly varying quality and popularity of online patient information. Out of 1157 topics (equivalent to 13 different topics on 89 websites), 59.44% were mentioned on the websites. Of these, 40% contained incorrect or incomplete information. Publicly provided websites presented the different topics more thoroughly. We could further show that HONcode certified websites received better quality and readability scores. Conclusions We found major shortcomings regarding readability, completeness and reliability of websites on CTCL. Nevertheless, highly selected websites on CTCL can serve as a valuable and reliable source of patient information. As a consequence, oncologists have an obligation to be aware of and guide their patients to available websites that contain reliable and appropriate information.

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“…25,26 A recent publication by Yeo et al suggested that, with the increase in patients acquiring information about testicular cancer from sources that are not validated or credible, direct patient education has become even more important. 28 Directing patients towards validated testicular cancer education programs is beneficial for patient-physician communication, as well as overall patient understanding. The testicular cancer model described in this study can serve as an adjunct for patient education and facilitate discussion regarding the benefits of screening and the risk of testicular malignancy.…”

Section: Cuaj -Original Researchmentioning

confidence: 99%

Development of a 3D-printed testicular cancer model for testicular examination education

Power

Hearn

Gillis

et al. 2020

CUAJ

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Introduction: Testicular cancer is the most commonly diagnosed malignancy in young males. Testicular examination is a non-invasive and inexpensive means of detecting testicular cancer at an early stage. In this project, a set of 3D-printed models was developed to facilitate teaching testicular examination and improving understanding of testicular malignancies among patients and medical learners. Methods: Five scrotum models were designed: a control model with healthy testes, and four models containing a healthy testicle and a testicle with an endophytic mass of varying size. The anatomy, texture, and composition of the 3D-printed models were refined using an iterative process between the design team and urologists. The completed models were assessed by six urologists, two urology nurse practitioners, and 32 medical learners. Participants were asked to inspect and palpate each model, and to provide feedback using a five-point Likert scale. Results: Clinicians reported that the models enabled accurate simulation of a testicular examination involving both healthy and pathological testes (x̅=4.3±1.0). They agreed that the models would be useful teaching tools for both medical learners (x̅=4.8±0.5) and patients (x̅=4.8±0.7). Following an educational session with the models, medical learners reported improvements in confidence and skill in performing a testicular examination. Conclusions: 3D-printed models can effectively simulate palpation of both healthy and pathological testes. The developed models have the potential to be a useful adjunct in teaching testicular examination and in demonstrating abnormal findings that require further investigation.

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A fountain of knowledge? The quality of online resources for testicular cancer patients

Cited by 6 publications

References 27 publications

Caught in the net: Characterizing how testicular cancer patients use the internet as an information source

Caught in the net: Characterizing how testicular cancer patients use the internet as an information source

Exploring the most visible websites on cutaneous T‐cell lymphoma—revealing limited quality of patient health information on the internet

Development of a 3D-printed testicular cancer model for testicular examination education

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