School of Biomedicine, The University of Adelaide, Adelaide, Australia.
Supportive Oncology Research Group, Precision Medicine Theme (Cancer), South Australian Health and Medical Research Institute, Adelaide, Australia.
Support Care Cancer. 2022 Dec;30(12):9953-9961. doi: 10.1007/s00520-022-07366-y. Epub 2022 Oct 10.
Engaging with patients and the public (consumers and community) enhances the relevance of cancer control developments; however, challenges remain to integrate into processes. Medical and other professional societies are well-positioned to foster and endorse best practice.
Between October and December 2021, the Multinational Association of Supportive Care in Cancer (MASCC) conducted a global consultation with those who identified as "people affected by cancer". Recruitment to an online cross-sectional survey was by a combination of purposive and convenience sampling to determine preferred terminologies and experiences with MASCC and other cancer-related societies.
The survey was completed by 343 respondents from 29 countries, a majority being female (78.1%) and younger than 60 years of age (62.1%). Respondents preferred to be identified as 'patient' from a set of defined terms; however, this only accounted for 49-67% of selected response across geographical regions. Only 22.2% of respondents had engaged previously with MASCC, of whom 90.8% reported a positive experience through involvement with education and information, networking and collaboration, and practice guidelines. Respondents perceived areas of opportunity as early involvement in decision-making, educational initiatives, open communication, and information sharing. Across all geographical regions, responders chose a preference to contribute to future consumer research (53.0%), policy (31.7%) or consumer engagement activities (56.9%) including participation in a conference session (65.0%) or patient day (47.9%).
This survey provides a first insight into how consumers wish to engage with MASCC. These values will be embedded into a strategy that aims for effective and sustainable partnerships with multinational consumers.
与患者和公众（消费者和社区）互动可以增强癌症控制发展的相关性；然而，在将其融入到过程中仍然存在挑战。医学和其他专业学会处于促进和支持最佳实践的有利地位。
在 2021 年 10 月至 12 月期间，多国支持癌症护理协会（MASCC）与自称为“癌症患者”的人进行了全球磋商。通过有目的和方便的抽样，招募了在线横断面调查的参与者，以确定 MASCC 和其他癌症相关学会的首选术语和经验。
该调查由来自 29 个国家的 343 名受访者完成，其中大多数为女性（78.1%）且年龄小于 60 岁（62.1%）。受访者更喜欢从一组定义的术语中被确定为“患者”；然而，这在地理区域的选择反应中仅占 49-67%。只有 22.2%的受访者之前曾与 MASCC 互动过，其中 90.8%通过参与教育和信息、网络和合作以及实践指南报告了积极的体验。受访者认为有机会的领域包括早期参与决策、教育计划、开放沟通和信息共享。在所有地理区域，受访者都选择优先参与未来的消费者研究（53.0%）、政策（31.7%）或消费者参与活动（56.9%），包括参与会议环节（65.0%）或患者日（47.9%）。
这项调查首次提供了有关消费者希望如何与 MASCC 互动的见解。这些价值观将被纳入一项战略，旨在与跨国消费者建立有效和可持续的伙伴关系。
