Perspectives on Social Media from Adolescents and Young Adults with Cancer

Daniels, Sarah; Yang, Chia-chen; Toohey, Samantha J; Willard, Victoria W.

doi:10.1177/1043454221992319

Cited by 15 publications

(3 citation statements)

References 31 publications

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“…In this study, approximately one-third of the identified Twitter users were cancer survivors who discussed their cancer experience, whereas others were family members and friends. Our data support the findings of previous studies that showed that both groups were present on social media for various reasons, such as seeking information resources and emotional and peer support on the web [ 17 - 21 , 50 - 52 ].…”

Section: Discussionsupporting

confidence: 91%

Using Patient-Generated Health Data From Twitter to Identify, Engage, and Recruit Cancer Survivors in Clinical Trials in Los Angeles County: Evaluation of a Feasibility Study

Reuter¹,

Angyan²,

Le³

et al. 2021

JMIR Form Res

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Background Failure to find and attract clinical trial participants remains a persistent barrier to clinical research. Researchers increasingly complement recruitment methods with social media–based methods. We hypothesized that user-generated data from cancer survivors and their family members and friends on the social network Twitter could be used to identify, engage, and recruit cancer survivors for cancer trials. Objective This pilot study aims to examine the feasibility of using user-reported health data from cancer survivors and family members and friends on Twitter in Los Angeles (LA) County to enhance clinical trial recruitment. We focus on 6 cancer conditions (breast cancer, colon cancer, kidney cancer, lymphoma, lung cancer, and prostate cancer). Methods The social media intervention involved monitoring cancer-specific posts about the 6 cancer conditions by Twitter users in LA County to identify cancer survivors and their family members and friends and contacting eligible Twitter users with information about open cancer trials at the University of Southern California (USC) Norris Comprehensive Cancer Center. We reviewed both retrospective and prospective data published by Twitter users in LA County between July 28, 2017, and November 29, 2018. The study enrolled 124 open clinical trials at USC Norris. We used descriptive statistics to report the proportion of Twitter users who were identified, engaged, and enrolled. Results We analyzed 107,424 Twitter posts in English by 25,032 unique Twitter users in LA County for the 6 cancer conditions. We identified and contacted 1.73% (434/25,032) of eligible Twitter users (127/434, 29.3% cancer survivors; 305/434, 70.3% family members and friends; and 2/434, 0.5% Twitter users were excluded). Of them, 51.4% (223/434) were female and approximately one-third were male. About one-fifth were people of color, whereas most of them were White. Approximately one-fifth (85/434, 19.6%) engaged with the outreach messages (cancer survivors: 33/85, 38% and family members and friends: 52/85, 61%). Of those who engaged with the messages, one-fourth were male, the majority were female, and approximately one-fifth were people of color, whereas the majority were White. Approximately 12% (10/85) of the contacted users requested more information and 40% (4/10) set up a prescreening. Two eligible candidates were transferred to USC Norris for further screening, but neither was enrolled. Conclusions Our findings demonstrate the potential of identifying and engaging cancer survivors and their family members and friends on Twitter. Optimization of downstream recruitment efforts such as screening for digital populations on social media may be required. Future research could test the feasibility of the approach for other diseases, locations, languages, social media platforms, and types of research involvement (eg, survey research). Computer science methods could help to scale up the analysis of larger data sets to support more rigorous testing of the intervention. Trial Registration ClinicalTrials.gov NCT03408561; https://clinicaltrials.gov/ct2/show/NCT03408561

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Section: Discussionsupporting

confidence: 91%

Using Patient-Generated Health Data From Twitter to Identify, Engage, and Recruit Cancer Survivors in Clinical Trials in Los Angeles County: Evaluation of a Feasibility Study

Reuter¹,

Angyan²,

Le³

et al. 2021

JMIR Form Res

View full text Add to dashboard Cite

show abstract

“…Given the growing role of social media in everyday life, it was surprising that so few studies explored the role of social media in communication. Other studies have shown that social media can help patients and families feel a sense of normalcy, support, and control despite their medical problems 141–143 . Furthermore, social supports are essential to helping families manage their child's illness, which is a core function of communication 3 .…”

Section: Discussionmentioning

confidence: 99%

Multilevel barriers and facilitators of communication in pediatric oncology: A systematic review

Sisk

Harvey

Friedrich

et al. 2021

Pediatric Blood & Cancer

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Multiple factors can facilitate or impede the fulfillment of communication functions in pediatric cancer. In this systematic review, we evaluated 109 studies from the preceding 20 years that presented qualitative or quantitative evidence of barriers or facilitators to communication in pediatric cancer. Using a multilevel framework developed in our prior study, we then analyzed and categorized the levels of barriers and facilitators identified in included studies. The vast majority of studies focused on individual‐level barriers, rather than team, organization/system, collaborating hospital, community, or policy‐level barriers. Future studies should explore the full range of factors that affect communication.

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“…This social isolation can interrupt the formation of peer, romantic, and professional relationships. In the era of social media, AYAs may experience distress as they witness the life they are missing [38] although other studies have suggested that social media can be a powerful tool to promote social/identity development, maintain normalcy, regain control over their life narrative, and manage peer relationships [39].…”

Section: Social Painmentioning

confidence: 99%

Psychosocial Distress Due to Interference of Normal Developmental Milestones in AYAs with Cancer

Itzep

Roth

2022

Children

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Cancer in the adolescent and young adult phase poses additional challenges to this period of development that is crucial to the transition to independence. This report provides a brief review of normal developmental milestones in this age range while highlighting the disruptive effects of cancer. We focus on the psychological burden of cancer in patients aged 15–39 years and explore the application of the total pain model to highlight the psychological/emotional, social, and spiritual aspects of non-physical pain. We also briefly review posttraumatic growth and resilience. Lastly, we provide a review of areas for possible development and future research.

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Perspectives on Social Media from Adolescents and Young Adults with Cancer

Cited by 15 publications

References 31 publications

Using Patient-Generated Health Data From Twitter to Identify, Engage, and Recruit Cancer Survivors in Clinical Trials in Los Angeles County: Evaluation of a Feasibility Study

Using Patient-Generated Health Data From Twitter to Identify, Engage, and Recruit Cancer Survivors in Clinical Trials in Los Angeles County: Evaluation of a Feasibility Study

Multilevel barriers and facilitators of communication in pediatric oncology: A systematic review

Psychosocial Distress Due to Interference of Normal Developmental Milestones in AYAs with Cancer

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