Schilstra Clarissa E, Wakefield Claire E, McLoone Jordana, Wiener Lori, Donoghoe Mark W, Hoffman Ruth I, Echodu Moses, Ortiz Roberta, Ilbawi André, Cayrol Julie
Faculty of Medicine and Health, UNSW Sydney, Randwick, NSW, Australia.
Behavioural Sciences Unit, Kids Cancer Centre, Level 1 South, Sydney Children'S Hospital, Randwick, NSW, 2031, Australia.
Support Care Cancer. 2025 May 3;33(5):445. doi: 10.1007/s00520-025-09372-2.
Assessing differences between lived experiences of people affected by cancer internationally facilitates direction of international health policies and standards. The study piloted, on behalf of the World Health Organization (WHO), a global survey assessing the lived experience of people affected by cancer. We aimed to determine (1) the acceptability of the survey and (2) the survey's capacity to capture a globally representative sample of people diagnosed with cancer.
The cross-sectional survey went through two pilot rounds. We (1) solicited feedback from international cancer organisations through a feedback form, and (2) launched a global online survey, requesting open-ended feedback on the survey format/content from people diagnosed with cancer, their family members/caregivers, and bereaved family members.
Round one: 23 stakeholders found the survey acceptable in length/content. Minor suggestions were to improve readability/applicability across healthcare settings. Round two: 505 individuals participated: 177 (35%) provided feedback on the study design (e.g. to include people currently being treated for cancer, and siblings) or survey (e.g. assessing impacts of multiple cancers). Participants seemed to value the opportunity to share their experiences: "Thanks…felt good to answer as if someone was listening." Compared with global statistics, our sample of people diagnosed with cancer (N = 240) included significantly more females (p < 0.001) and individuals from high-income countries (p < 0.001).
Participant feedback informed important changes to the survey design and content. Our findings highlight that engaging with people with lived experience is a critical first step to develop such a global survey, optimise participation, and amplify individuals' voices.
评估全球范围内癌症患者的生活经历差异，有助于指导国际卫生政策和标准的制定。本研究代表世界卫生组织（WHO）开展了一项全球调查，以评估癌症患者的生活经历。我们旨在确定：（1）该调查的可接受性；（2）该调查获取全球具有代表性的癌症确诊患者样本的能力。
这项横断面调查进行了两轮试点。我们：（1）通过反馈表征求国际癌症组织的反馈意见；（2）开展了一项全球在线调查，向癌症确诊患者、其家庭成员/护理人员以及失去亲人的家庭成员征求对调查形式/内容的开放式反馈意见。
第一轮：23名利益相关者认为该调查在长度/内容方面是可接受的。一些小建议是提高在不同医疗环境下的可读性/适用性。第二轮：505人参与：177人（35%）就研究设计（如纳入目前正在接受癌症治疗的患者和兄弟姐妹）或调查（如评估多种癌症的影响）提供了反馈意见。参与者似乎很重视分享他们经历的机会：“谢谢……回答问题感觉很好，就好像有人在倾听一样。”与全球统计数据相比，我们的癌症确诊患者样本（N = 240）中女性（p < 0.001）和来自高收入国家的个体（p < 0.001）明显更多。
参与者的反馈为调查设计和内容的重要改进提供了依据。我们的研究结果表明，与有实际生活经历的人合作是开展此类全球调查、优化参与度并放大个人声音的关键第一步。
