A comparison of the sociodemographic, medical, and psychosocial characteristics of adolescents and young adults diagnosed with cancer recruited in-person and online: A Canadian cross-sectional survey

Author:

Bender Jacqueline L123ORCID,Akinnibosun Rukayyah12,Puri Natasha1,D’Agostino Norma4,Drake Emily K4ORCID,Tsimicalis Argerie5,Howard A Fuchsia6,Garland Sheila N7,Chalifour Karine8,Gupta Abha A910

Affiliation:

1. Cancer Rehabilitation and Survivorship, Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, ON, Canada

2. Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada

3. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada

4. Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, ON, Canada

5. Ingram School of Nursing, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada

6. School of Nursing, The University of British Columbia, Vancouver, BC, Canada

7. Department of Psychology, Memorial University, St John's, NL, Canada

8. Young Adult Cancer Canada, St John's, NL, Canada

9. Division of Medical Oncology and Hematology, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada

10. Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada

Abstract

Introduction Adolescents and young adults diagnosed with cancer (AYAs) are under-represented in research. The Internet and social media could increase the reach of recruitment efforts but may impact sample characteristics. This study evaluated the characteristics of AYAs recruited in-person at an urban hospital versus the Internet in terms of their sociodemographic and medical characteristics, and psychosocial wellbeing, and offers recommendation for increasing the inclusivity and representativeness of research samples. Methods Participant data from a cross-sectional survey of AYAs in Canada were evaluated. In-person hospital recruitment used a registry to identify patients attending ambulatory clinics. Internet recruitment included notices on hospital, team members’, and community partners’ social media channels, and email newsletters. Independent sample t-tests and Chi-squared tests were used to identify differences in participant sociodemographic, medical, and psychosocial characteristics based on recruitment source. Results Of 436 participants, 217 (49.8%) were recruited in-person and 219 (50.2%) online. Online participants were more likely: to be white ( p < .001), women ( p < .001), and Canadian-born ( p < .001); to speak English at home ( p < .001), live alone ( p = .001) and live in rural settings ( p = .014); and to be farther from diagnosis ( p = .023), diagnosed with breast cancer ( p < .001), and cancer free ( p < .001) compared to the hospital sample. Online participants also reported higher anxiety, depression, and loneliness ( p < .001), and lower social support (p < .001), self-efficacy for coping with cancer ( p < .001), and life satisfaction ( p = .006). Conclusions Online recruitment yielded a more geographically diverse but less sociodemographically diverse sample of AYAs who were farther from diagnosis and had poorer psychosocial wellbeing than in-person recruitment at an urban hospital. Future research efforts should consider partnering with under-represented communities and using targeted and stratified online and in-person recruitment strategies to achieve an inclusive and representative sample of AYAs.

Funder

Canadian Centre for Applied Research in Cancer Control

Publisher

SAGE Publications

Subject

Health Information Management,Computer Science Applications,Health Informatics,Health Policy

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