The extent to which cancer patients trust in cancer-related online information: a systematic review

Background The use of the internet to satisfy information needs is widespread among cancer patients. Patients’ decisions regarding whether to act upon the information they find strongly depend on the trustworthiness of the information and the medium. Patients who are younger, more highly educated and female are more likely to trust online information. The objectives of this systematic review were to examine the extent to which cancer patients trust in cancer-related online information, internet websites as a source of cancer-related information or the internet as a medium of cancer information. Methods A systematic review was conducted using five databases (PROSPERO registration number: CRD42017070190). Studies of any kind were included if they measured cancer patients’ trust in online health information. Study quality was assessed using the Research Triangle Institute (RTI) item bank. A narrative synthesis was undertaken to examine the included studies. Results Of the 7,314 citations obtained by the search, seven cross-sectional studies were included in the synthesis. A total of 1,054 patients reported having some or a great deal of trust in online cancer information; 154 patients reported moderately trusting such information; and 833 patients reported having no or little trust in online cancer information, internet websites as a source of cancer-related information or the internet as a medium of cancer-related information. Two of the seven studies reported between group comparisons for the above-stated patient characteristics. The methodological quality of the included studies was diverse. Conclusion The results of the included studies indicates that approximately half of cancer patients appear to trust cancer-specific online information, internet websites as a source of cancer-related information or the internet as an information medium. However, the small number of included studies, high heterogeneity of participants, methods and outcomes calls for further systematic research. It is important to understand that cancer patients do and will increasingly use trusted cancer information websites to search for information concerning their disease. Therefore, physicians and other health care providers should provide more support and advice to these patients.

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

Canadian Urological Association Journal ◽

10.5489/cuaj.6870 ◽

2021 ◽

Vol 15 (8) ◽

Author(s):

Sarah Yeo ◽

Bernhard Eigl ◽

Sherry Chan ◽

Christian Kollmannsberger ◽

Paris-Ann Ingledew

Keyword(s):

Testicular Cancer ◽

Cancer Patients ◽

Information Source ◽

Adult Population ◽

Treatment Decision ◽

Cancer Center ◽

Cancer Information ◽

The Internet ◽

Online Information ◽

Healthcare Information

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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Surveys of Cancer Patients and Cancer Health Care Providers Regarding Complementary Therapy Use, Communication, and Information Needs

Integrative Cancer Therapies ◽

10.1177/1534735415589984 ◽

2015 ◽

Vol 14 (6) ◽

pp. 515-524 ◽

Cited By ~ 32

Author(s):

Ngaire King ◽

Lynda G. Balneaves ◽

Gregory T. Levin ◽

Thao Nguyen ◽

Jill G. Nation ◽

...

Keyword(s):

Health Care ◽

Cancer Patients ◽

Health Care Providers ◽

Information Needs ◽

Complementary Therapy ◽

Care Providers

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Searching the Internet for Infertility Information: A Survey of Patient Needs and Preferences (Preprint)

10.2196/preprints.15132 ◽

2019 ◽

Author(s):

Felicia Brochu ◽

Stephanie Robins ◽

Skye A Miner ◽

Paul H Grunberg ◽

Peter Chan ◽

...

Keyword(s):

Perceived Stress ◽

Health Care Providers ◽

Depressive Symptomatology ◽

Treatment Options ◽

The Internet ◽

Care Providers ◽

Sources Of Information ◽

Web Based ◽

Related Information ◽

Support Resources

BACKGROUND Given the complexity of infertility diagnoses and treatments and the convenience of the internet for finding health-related information, people undergoing infertility treatments often use Web-based resources to obtain infertility information and support. However, little is known about the types of information and support resources infertility patients search for on the internet and whether these resources meet their needs. OBJECTIVE The aims of this study were to (1) examine what individual factors, namely, demographic characteristics and distress, are associated with searching the internet for different types of infertility-related information and support resources and (2) determine whether Web-based resources meet the needs of patients. METHODS Men and women seeking infertility care responded to a survey assessing use of Web-based resources for accessing infertility-related information and support. The survey further assessed satisfaction with Web-based resources as well as perceived stress and depressive symptomatology. RESULTS A total of 567 participants, including 254 men and 313 women, completed the survey. Most participants (490/558, 87.8%) had searched the internet for infertility information and support. Searchers were more likely to be women (<italic>P</italic><.001), highly educated (<italic>P</italic>=.04), long-term patients (<italic>P</italic>=.03), and more distressed (<italic>P</italic>=.04). Causes of infertility, treatment options, and scientific literature about infertility were the three most frequently searched topics, whereas ways to discuss treatment with family and friends as well as surrogacy and ways to find peer support were the three least searched topics. Of those who searched the internet, 70.9% (346/488) indicated that their needs were met by Web-based information, whereas 29.1% (142/488) said that their needs were not met. Having unmet needs was related to greater levels of perceived stress (<italic>P</italic>=.005) and depressive symptomatology (<italic>P</italic>=.03). CONCLUSIONS This study provides evidence for the important role of the internet in accessing infertility information and support and for the ability of Web-based resources to meet patients’ needs. However, although distressed patients reported particularly high rates of searching, their needs were not always met, suggesting that they may benefit from alternative sources of information and support or guidance from health care providers when searching the internet.

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The Quality of Web Sites' Health Information on Minimal Invasive Repair of Pectus Excavatum Using the DISCERN Instrument

European Journal of Pediatric Surgery ◽

10.1055/s-0040-1710026 ◽

2020 ◽

Author(s):

Wietse P. Zuidema ◽

Maarten J. Graumans ◽

Jan W. A. Oosterhuis ◽

Alida F. W. van der Steeg ◽

Ernest van Heurn

Keyword(s):

Health Information ◽

Health Care Providers ◽

Web Sites ◽

Pectus Excavatum ◽

Medical Information ◽

Treatment Options ◽

The Internet ◽

Care Providers ◽

Related Information

Abstract Introduction The Internet is a frequently used tool for patients with pectus excavatum (PE) to get information about symptoms and treatment options. In addition, it is used by both health care providers as a marketing tool and support group systems. The Internet health information varies in precision, quality, and reliability. The study purpose was to determine the quality of information on the PE Web sites using the DISCERN instrument, including information about operation and potential complications after a Nuss bar procedure. Materials and Methods Four search engines, Google, Yahoo, Ask, and Bing, were used to explore seven key terms concerning PE. Search language was English. The DISCERN quality instrument was used to evaluate the Web sites. Also, information on possible complications was scored per Web site. Results A total of 560 Web sites were assessed in March 2019. Excluded were 139 Web sites. There were 333 duplicates, leaving 88 unique Web sites. Of these, 58.1% were hospital-related information Web sites, 28.4% medical information Web sites, and 3.4% patient forum sites. Interactive multimedia was used on 21.6% of the sites. Pain postoperatively was mentioned on 64.8% of the sites, while only 9.1% mentioned the mortality risk of the surgical correction of PE for Nuss bar placement. The quality of the unique Web sites showed a mean DISCERN score of 42.5 (standard deviation 12.2). Medical information Web sites, encyclopedia, and government-sponsored sites had higher DISCERN scores. Hospital-related information sites, medical companies, and lay persons' sites, had lower total scores. Conclusion The overall quality of PE Web sites is low to moderate, with serious shortcomings.

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The Digital Divide in Internet-Based Patient Education Materials

Otolaryngology ◽

10.1177/0194599812456153 ◽

2012 ◽

Vol 147 (5) ◽

pp. 855-857 ◽

Cited By ~ 11

Author(s):

Gordon H. Sun

Keyword(s):

Patient Education ◽

Health Care Providers ◽

Sixth Grade ◽

Neck Surgery ◽

Reading Level ◽

The Internet ◽

Care Providers ◽

Related Information ◽

Health Related ◽

Grade Reading Level

The ubiquity of the Internet has led to the widespread availability of health-related information to the public, and the subsequent empowerment of patients has fundamentally altered the patient-physician relationship. Among several concerns of physicians is the possibility that patients may be misinformed by information obtained from the Internet. One opportunity for health care providers to address this problem exists within Internet-based patient education materials (IPEMs). According to recent research in Otolaryngology–Head and Neck Surgery, IPEMs found within professional otolaryngology websites are written at the 8th- to 18th-grade reading comprehension level, essentially unchanged over the past 3 years. This greatly exceeds the fourth- to sixth-grade reading level recommended by the National Institutes of Health. Benefits, strategies, and challenges to improving the readability of IPEMs are discussed.

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Searching the Internet for Infertility Information: A Survey of Patient Needs and Preferences

Journal of Medical Internet Research ◽

10.2196/15132 ◽

2019 ◽

Vol 21 (12) ◽

pp. e15132 ◽

Cited By ~ 5

Author(s):

Felicia Brochu ◽

Stephanie Robins ◽

Skye A Miner ◽

Paul H Grunberg ◽

Peter Chan ◽

...

Keyword(s):

Perceived Stress ◽

Health Care Providers ◽

Depressive Symptomatology ◽

Treatment Options ◽

The Internet ◽

Care Providers ◽

Sources Of Information ◽

Web Based ◽

Related Information ◽

Support Resources

Background Given the complexity of infertility diagnoses and treatments and the convenience of the internet for finding health-related information, people undergoing infertility treatments often use Web-based resources to obtain infertility information and support. However, little is known about the types of information and support resources infertility patients search for on the internet and whether these resources meet their needs. Objective The aims of this study were to (1) examine what individual factors, namely, demographic characteristics and distress, are associated with searching the internet for different types of infertility-related information and support resources and (2) determine whether Web-based resources meet the needs of patients. Methods Men and women seeking infertility care responded to a survey assessing use of Web-based resources for accessing infertility-related information and support. The survey further assessed satisfaction with Web-based resources as well as perceived stress and depressive symptomatology. Results A total of 567 participants, including 254 men and 313 women, completed the survey. Most participants (490/558, 87.8%) had searched the internet for infertility information and support. Searchers were more likely to be women (P<.001), highly educated (P=.04), long-term patients (P=.03), and more distressed (P=.04). Causes of infertility, treatment options, and scientific literature about infertility were the three most frequently searched topics, whereas ways to discuss treatment with family and friends as well as surrogacy and ways to find peer support were the three least searched topics. Of those who searched the internet, 70.9% (346/488) indicated that their needs were met by Web-based information, whereas 29.1% (142/488) said that their needs were not met. Having unmet needs was related to greater levels of perceived stress (P=.005) and depressive symptomatology (P=.03). Conclusions This study provides evidence for the important role of the internet in accessing infertility information and support and for the ability of Web-based resources to meet patients’ needs. However, although distressed patients reported particularly high rates of searching, their needs were not always met, suggesting that they may benefit from alternative sources of information and support or guidance from health care providers when searching the internet.

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Cancer patients searching for cancer- or health-specific online information: A qualitative analysis of navigation strategies and problems when using the Internet (Preprint)

10.2196/preprints.23367 ◽

2020 ◽

Author(s):

Lukas Lange-Drenth ◽

Holger Schulz ◽

Gero Endsin ◽

Christiane Bleich

Keyword(s):

Cancer Patients ◽

Information Needs ◽

Active Role ◽

The Internet ◽

Online Information ◽

Search Tasks ◽

Search Terms ◽

Internet Searching ◽

Oncological Rehabilitation ◽

Performance Problems

BACKGROUND Searching the Internet for cancer-related information helps cancer patients satisfy their unmet information needs and empower them to play a more active role in the management of their disease. However, to benefit from the search, patients need a sufficient level of skills to search, select, appraise, and apply online health information. OBJECTIVE To study the operational, navigation, information, and evaluation skills and problems of cancer patients performing cancer-related search tasks using the Internet. METHODS Twenty-one cancer patients were recruited during their stay at the rehabilitation clinic for oncological rehabilitation. The participants performed eight cancer-related search tasks using the Internet. The participants were asked to think aloud while performing the tasks, and screen activities were recorded. The types and frequency of performance problems were identified and coded into categories following an inductive coding process. Additionally, the performance and strategic characteristics of task execution were summarized descriptively. RESULTS All the participants experienced problems or difficulties executing the tasks, and a substantial percentage of tasks (40%) could not be completed successfully. The participants’ performance problems were coded into four categories: (1) operating the computer and web browser, (2) navigating and orientating, (3) utilizing search strategies, and (4) evaluating the relevance and reliability of online information. The most frequent problems occurred in the third and fourth categories. Nineteen (90%) participants used nontask-related search terms or nonspecific search terms. Twenty (95%) participants never controlled the source or topicality of the found information. Additionally, none of the participants verified the information on one website with that on another website for each task. CONCLUSIONS A substantial group of cancer patients did not have the necessary skills to benefit from cancer-related Internet searching. Future interventions are needed to support patients in the development of sufficient Internet searching skills, focusing particularly on information and evaluation skills.

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The Impact of a Highly Publicized Celebrity Suicide on Suicide-Related Online Information Seeking

Crisis ◽

10.1027/0227-5910/a000455 ◽

2017 ◽

Vol 38 (3) ◽

pp. 207-209 ◽

Cited By ~ 9

Author(s):

Florian Arendt ◽

Sebastian Scherr

Keyword(s):

Suicide Prevention ◽

Information Seeking ◽

The Internet ◽

Online Information ◽

Search Queries ◽

Related Information ◽

Search Terms ◽

Celebrity Suicide ◽

Online Information Seeking ◽

The Impact

Abstract. Background: Research has already acknowledged the importance of the Internet in suicide prevention as search engines such as Google are increasingly used in seeking both helpful and harmful suicide-related information. Aims: We aimed to assess the impact of a highly publicized suicide by a Hollywood actor on suicide-related online information seeking. Method: We tested the impact of the highly publicized suicide of Robin Williams on volumes of suicide-related search queries. Results: Both harmful and helpful search terms increased immediately after the actor's suicide, with a substantial jump of harmful queries. Limitations: The study has limitations (e.g., possible validity threats of the query share measure, use of ambiguous search terms). Conclusion: Online suicide prevention efforts should try to increase online users' awareness of and motivation to seek help, for which Google's own helpline box could play an even more crucial role in the future.

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