TY - JOUR
T1 - AYAs' online information and eHealth needs
T2 - A comparison with healthcare professionals' perceptions
AU - van de Graaf, Daniëlle L
AU - Vlooswijk, Carla
AU - Bol, Nadine
AU - Krahmer, Emiel J
AU - Bijlsma, Rhodé
AU - Kaal, Suzanne
AU - Sleeman, Sophia H E
AU - van der Graaf, Winette T A
AU - Husson, Olga
AU - van Eenbergen, Mies C
N1 - 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.
PY - 2023/1
Y1 - 2023/1
N2 - 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 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.
AB - 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 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.
KW - adolescent
KW - AYA
KW - cancer
KW - eHealth
KW - healthcare professional
KW - online information needs
KW - young adult
UR - https://www.scopus.com/pages/publications/85134702486
U2 - 10.1002/cam4.5048
DO - 10.1002/cam4.5048
M3 - Article
C2 - 35879825
SN - 2045-7634
VL - 12
SP - 2016
EP - 2026
JO - Cancer Medicine
JF - Cancer Medicine
IS - 2
ER -