CoRPS - Center of Research on Psychological disorders and Somatic diseases, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands.
Department of Research and Development, Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, The Netherlands.
Cancer Med. 2023 Jan;12(2):2016-2026. doi: 10.1002/cam4.5048. Epub 2022 Jul 25.
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.
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.
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).
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.
青少年和青年癌症患者（AYAs）经常通过互联网满足其癌症相关信息需求。医疗保健专业人员（HCPs）在指导患者寻找适当的在线信息和电子健康资源方面发挥着至关重要的作用，而这一角色往往被忽视。HCPs 对 AYAs 需求的误解可能导致指导效果不佳。我们旨在研究 AYAs 的在线信息和电子健康需求与 HCPs 对这些需求的看法之间的一致性程度。
对 299 名 AYAs 和 80 名 HCPs 进行了两项关于在线信息和电子健康需求的横断面在线调查。HCPs 对 AYAs 的需求提供了他们的看法。
与 HCPs 的看法相比，AYAs 报告了更多的在线信息需求，包括：生存率（AYA=69%，HCP=35%，p<0.001）、治疗指南（AYA=65%，HCP=41%，p<0.001）、癌症复发（AYA=76%，HCP=59%，p=0.004）、“我自己能做什么”（AYA=68%，HCP=54%，p=0.029）和转移（AYA=64%，HCP=50%，p=0.040）。与 HCPs 相比，AYAs 报告了更多未满足的电子健康需求，包括：访问自己的测试结果（AYA=25，HCP=0%，p<0.001）、要求进行测试（AYA=30%，HCP=7%，p<0.001）、医疗信息（AYA=22%，HCP=0%，p=0.001）、与护士的电子咨询（AYA=30%，HCP=10%，p<0.001）、与医生的电子咨询（AYA=38%，HCP=13%，p=0.001）和要求开处方（AYA=33%，HCP=21%，p=0.009）。
AYAs 的在线信息和电子健康需求与 HCPs 的印象部分不一致，这可能导致对 AYAs 需求的指导不足。AYAs 和 HCPs 应该在他们理解的语言中获得关于在哪里找到最佳信息的指导。这可能有助于 AYAs 获得、理解和满足在线信息和电子健康的需求。
