Thyroid cancer survivors’ perceptions of survivorship care follow-up options: a cross-sectional, mixed-methods survey

Bender, Jacqueline L.; Wiljer, David; Sawka, Anna M.; Tsang, Richard W.; Alkazaz, Nour; Brierley, James D.

doi:10.1007/s00520-015-2981-5

Cited by 25 publications

(28 citation statements)

References 33 publications

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“…In line with previous research, the highest proportion of the survivors reported a preference for the medical specialist [14][15][16][17]. Previous research shows that survivors rate follow-up care provided by oncology nurses higher than follow-up care provided by general practitioners [16,17].…”

Section: Discussionsupporting

confidence: 87%

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Cancer survivors’ preference for follow-up care providers: a cross-sectional study from the population-based PROFILES-registry

et al. 2017

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Section: Discussionsupporting

confidence: 87%

“…To our knowledge, few quantitative studies have assessed cancer survivors' preferences for follow-up care [14][15][16][17]. However, these quantitative studies neither identify survivorrelated characteristics associated with survivors' preferences for follow-up care nor describe the preferred care provider to discuss cancer-related problems.…”

mentioning

confidence: 99%

Cancer survivors’ preference for follow-up care providers: a cross-sectional study from the population-based PROFILES-registry

et al. 2017

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“…First, the majority of cancer patients report using the Internet as a source of health information. For example, 86% of a sample of 202 thyroid cancer patients [38] surveyed from the same hospital where this study was conducted, and 68% of a sample of 824 Canadian prostate cancer patients [39], reported using the Internet to search for information related to their cancer. As people spend more time online, they leave a digital trail.…”

Section: Discussionmentioning

confidence: 99%

Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment

Bender¹,

Cyr²,

Arbuckle³

et al. 2017

J Med Internet Res

122

106

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BackgroundThe Internet and social media offer promising ways to improve the reach, efficiency, and effectiveness of recruitment efforts at a reasonable cost, but raise unique ethical dilemmas. We describe how we used social media to recruit cancer patients and family caregivers for a research study, the ethical issues we encountered, and the strategies we developed to address them.ObjectiveDrawing on the principles of Privacy by Design (PbD), a globally recognized standard for privacy protection, we aimed to develop a PbD framework for online health research recruitment.MethodsWe proposed a focus group study on the dietary behaviors of cancer patients and their families, and the role of Web-based dietary self-management tools. Using an established blog on our hospital website, we proposed publishing a recruitment post and sharing the link on our Twitter and Facebook pages. The Research Ethics Board (REB) raised concern about the privacy risks associated with our recruitment strategy; by clicking on a recruitment post, an individual could inadvertently disclose personal health information to third-party companies engaged in tracking online behavior. The REB asked us to revise our social media recruitment strategy with the following questions in mind: (1) How will you inform users about the potential for privacy breaches and their implications? and (2) How will you protect users from privacy breaches or inadvertently sharing potentially identifying information about themselves?ResultsEthical guidelines recommend a proportionate approach to ethics assessment, which advocates for risk mitigation strategies that are proportional to the magnitude and probability of risks. We revised our social media recruitment strategy to inform users about privacy risks and to protect their privacy, while at the same time meeting our recruitment objectives. We provide a critical reflection of the perceived privacy risks associated with our social media recruitment strategy and the appropriateness of the risk mitigation strategies that we employed by assessing their alignment with PbD and by discussing the following: (1) What are the potential risks and who is at risk? (2) Is cancer considered “sensitive” personal information? (3) What is the probability of online disclosure of a cancer diagnosis in everyday life? and (4) What are the public’s expectations for privacy online and their views about online tracking, profiling, and targeting? We conclude with a PbD framework for online health research recruitment.ConclusionsResearchers, REBs, ethicists, students, and potential study participants are often unaware of the privacy risks of social media research recruitment and there is no official guidance. Our PbD framework for online health research recruitment is a resource for these wide audiences.

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“…Follow-up of patients with thyroid cancer is crucial both due to the life-long levothyroxine treatment and the remaining recurrence risk decades after the diagnosis. Follow-up options are studied with open ended questions, and the important factor for patients is the reassurance that the method of follow-up, whether it is primary care or specialised care, provides adequate care 207 .…”

Section: Hrqol Evaluated With Qualitative Methodsmentioning

confidence: 99%

Anxiety and Fear of Recurrence Despite a Good Prognosis: An Interview Study with Differentiated Thyroid Cancer Patients

Hedman

Strang

Djärv

et al. 2017

Thyroid

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Thyroid cancer survivors’ perceptions of survivorship care follow-up options: a cross-sectional, mixed-methods survey

Cited by 25 publications

References 33 publications

Cancer survivors’ preference for follow-up care providers: a cross-sectional study from the population-based PROFILES-registry

Cancer survivors’ preference for follow-up care providers: a cross-sectional study from the population-based PROFILES-registry

Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment

Anxiety and Fear of Recurrence Despite a Good Prognosis: An Interview Study with Differentiated Thyroid Cancer Patients

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