AYAs' online information and eHealth needs: A comparison with healthcare professionals' perceptions
van de Graaf, Daniëlle L; Vlooswijk, Carla; Bol, Nadine; Krahmer, Emiel J; Bijlsma, Rhodé; Kaal, Suzanne; Sleeman, Sophia H E; van der Graaf, Winette T A; Husson, Olga; van Eenbergen, Mies C
(2023) Cancer Medicine, volume 12, issue 2, pp. 2016 - 2026
(Article)
Abstract
Background: Adolescents and young adults (AYAs) diagnosed with cancer fulfill their cancer-related information needs often via the Internet. Healthcare professionals (HCPs) have a crucial role in guiding patients in finding appropriate online information and eHealth sources, a role that is often overlooked. Misperceptions of AYAs' needs by HCPs may lead
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to suboptimal guidance. We aimed to examine the extent to which AYAs' online information and eHealth needs corresponded with HCPs' perceptions of these needs. Methods: Two cross-sectional online surveys (AYAs, n = 299; HCP, n = 80) on online information and eHealth needs were conducted. HCPs provided indications of their perceptions of AYA's needs. Results: AYAs reported significantly more online information needs compared with HCPs' perceptions regarding: survival rates (AYA = 69%, HCP = 35%, p < 0.001), treatment guidelines (AYA = 65%, HCP = 41%, p < 0.001), return of cancer (AYA = 76%, HCP = 59%, p = 0.004), “what can I do myself” (AYA = 68%, HCP = 54%, p = 0.029), and metastases (AYA = 64%, HCP = 50%, p = 0.040). Significantly more unmet eHealth needs were reported by AYAs compared with HCPs relating to access to own test results (AYA = 25, HCP = 0%, p < 0.001), request tests (AYA = 30%, HCP = 7%, p < 0.001), medical information (AYA = 22%, HCP = 0%, p = 0.001), e-consult with nurses (AYA = 30%, HCP = 10%, p < 0.001), e-consult with physicians (AYA = 38%, HCP = 13%, p = 0.001), and request prescriptions (AYA = 33%, HCP = 21%, p = 0.009). Conclusion: AYAs' online information and eHealth needs are partially discrepant with the impression HCPs have, which could result in insufficient guidance related to AYAs' needs. AYAs and HCPs should get guidance regarding where to find optimal information in a language they understand. This may contribute to AYAs' access, understanding, and satisfaction regarding online information and eHealth.
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Keywords: adolescent, AYA, cancer, eHealth, healthcare professional, online information needs, young adult, Oncology, Radiology Nuclear Medicine and imaging, Cancer Research, Journal Article
ISSN: 2045-7634
Publisher: John Wiley & Sons Inc.
Note: Funding Information: We would like to thank patients and healthcare professionals for participating in this study, with special thanks to the following hospitals: Amsterdam UMC (location AMC), UMC Utrecht, NKI, and Erasmus MC. We would also like to thank Kanker.nl and the Youth and Cancer Foundation (SJK) for participating in this study. Funding Information: The COMPRAYA study was funded by an Infrastructural grant (#11788) from The Dutch Cancer Society (Amsterdam, The Netherlands). Dr. Olga Husson is supported by a personal research grant (VIDI; #198.007—Facing the unthinkable in the prime of life: Prevalence, risk factors, and mechanisms of impaired medical and psychosocial health outcomes among adolescents and young adults with cancer) of the Netherlands Organization for Scientific Research. Publisher Copyright: © 2022 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.
(Peer reviewed)