Characteristics of the cohort.

BackgroundDiscrepancies have been reported between what is being researched, and what patients/families deem important to be investigated. Our aim was to understand research priorities for those who live with cancer in Aotearoa/New Zealand, with emphasis on Māori.MethodsAdult outpatients with cancer and their whānau/family completed a survey (demographics, selecting keywords, free-text comments) at Christchurch hospital. Quantitative and qualitative data were evaluated using standard statistical and thematic analyses, respectively.ResultsWe recruited 205 participants, including both tūroro/patients (n = 129) and their whānau/family/carer (n = 76). Partnership with Māori health workers enabled greater recruitment of Māori participants (19%), compared to the proportion of Māori in Canterbury (9%). Cancer research was seen as a priority by 96% of participants. Priorities were similar between Māori and non-Māori participants, with the keywords ‘Cancer screening’, ‘Quality of Life’ and ‘Development of new drugs’ chosen most often. Free-text analysis identified three themes; ‘Genetics and Prevention’, ‘Early Detection and Treatment’, and ‘Service Delivery’, with some differences by ethnicity.ConclusionsCancer research is a high priority for those living with cancer. In addition, participants want researchers to listen to their immediate and practical needs. These findings may inform future cancer research in Aotearoa.Māori terms and translationAotearoa (New Zealand)he aha ō whakaaro (what are your thoughts)hui (gathering)mate pukupuku (cancer)mokopuna (descendent)Ōtautahi (Christchurch)rongoā (traditional healing)tāne (male)te reo (Māori language)Te Whatu Ora (weaving of wellness, Health New Zealand)tikanga (methods, customary practices)tūroro (patients) (alternative terms used: whānau affected by cancer or tangata whaiora (person seeking health))wahine (female)Waitaha (Canterbury)whakapapa (genealogy)whānau ((extended) family, based on whakapapa, here also carer)

## 背景
已有研究报道，当前癌症研究的方向与患者/家属认为值得开展的研究议题之间存在脱节。本研究旨在明确新西兰奥特亚罗瓦（Aotearoa）地区癌症患者群体的研究优先事项，重点关注毛利族（Māori）人群。

## 方法
在克赖斯特彻奇医院（Christchurch Hospital），成年癌症门诊患者及其家族（whānau，基于毛利族系的扩展家庭，此处亦指照料者）完成了调查问卷，问卷内容涵盖人口统计学信息、关键词选择以及自由文本评论。本研究分别采用标准统计学分析与主题分析法，对定量数据与定性数据进行解读。

## 结果
本研究共招募205名参与者，包括肿瘤患者（tūroro，替代称谓：受癌症影响的家族或寻求医疗照护者（tangata whaiora））129名，以及其家族/照料者76名。通过与毛利族医疗工作者开展合作，本次研究招募的毛利族参与者占比达19%，显著高于坎特伯雷（Waitaha）地区的毛利族人口占比（9%）。96%的参与者将癌症研究视为优先研究方向。毛利族与非毛利族参与者的研究优先事项大体一致，其中最常被选中的关键词为「癌症筛查」、「生活质量」与「新药研发」。对自由文本的分析共提炼出三大主题：「遗传学与预防」、「早期检测与治疗」以及「服务供给」，不同族裔群体间存在细微差异。

## 结论
癌症研究是癌症患者群体的高度优先事项。此外，参与者期望研究人员能够倾听他们切实且紧迫的需求。本研究结果可为新西兰奥特亚罗瓦地区未来的癌症研究提供参考。

## 毛利语术语及翻译
Aotearoa：新西兰
he aha ō whakaaro：您有何想法（what are your thoughts）
hui：集会
mate pukupuku：癌症
mokopuna：后代
Ōtautahi：克赖斯特彻奇
rongoā：传统疗愈疗法
tāne：男性
te reo：毛利语
Te Whatu Ora：健康编织（Health New Zealand，新西兰卫生部官方名称）
tikanga：方法/传统习俗
tūroro：患者（替代称谓：受癌症影响的家族或tangata whaiora（寻求医疗照护者））
wahine：女性
Waitaha：坎特伯雷
whakapapa：系谱/家族谱系
whānau：（扩展）家族，基于家族谱系，此处亦指照料者