Camuso Natasha, Bajaj Prerna, Dudgeon Deborah, Mitera Gunita
Canadian Partnership Against Cancer, 1 University Avenue, Suite 300, Toronto, Ontario, M5J 2P1, Canada.
Queen's University, Kingston, ON, Canada.
Support Care Cancer. 2016 Aug;24(8):3543-9. doi: 10.1007/s00520-016-3151-0. Epub 2016 Mar 28.
Tools to collect patient-reported outcome measures (PROMs) are frequently used in the healthcare setting to collect information that is most meaningful to patients. Due to discordance among how patients and healthcare providers rank symptoms that are considered most meaningful to the patient, engagement of patients in the development of PROMs is extremely important. This review aimed to identify studies that described how patients are involved in the item generation stage of cancer-specific PROM tools developed for cancer patients.
A literature search was conducted using keywords relevant to PROMs, cancer, and patient engagement. A manual search of relevant reference lists was also conducted. Inclusion criteria stipulated that publications must describe patient engagement in the item generation stage of development of cancer-specific PROM tools. Results were excluded if they were duplicate findings or non-English.
The initial search yielded 230 publications. After removal of duplicates and review of publications, 6 were deemed relevant. Fourteen additional publications were retrieved through a manual search of references from relevant publications. A total of 13 unique PROM tools that included patient input in item generation were identified. The most common method of patient engagement was through qualitative interviews or focus groups.
Despite recommendations from international groups and the emphasized importance of incorporating patient feedback in all stages of development of PROMs, few unique tools have incorporated patient input in item generation of cancer-specific tools. Moving forward, a framework of best practices on how to best engage patients in developing PROMs is warranted to support high-quality patient-centered care.
在医疗环境中，用于收集患者报告结局测量指标（PROMs）的工具经常被用于收集对患者最有意义的信息。由于患者和医疗服务提供者对被认为对患者最有意义的症状的排序不一致，让患者参与PROMs的开发极为重要。本综述旨在识别描述患者如何参与为癌症患者开发的特定癌症PROM工具的条目生成阶段的研究。
使用与PROMs、癌症和患者参与相关的关键词进行文献检索。还对手头检索相关参考文献列表。纳入标准规定，出版物必须描述患者参与特定癌症PROM工具开发的条目生成阶段。如果结果是重复发现或非英文的，则予以排除。
初步检索产生了230篇出版物。在去除重复项并审阅出版物后，6篇被认为相关。通过对手头检索相关出版物的参考文献，又检索到14篇出版物。总共识别出13种在条目生成中纳入了患者意见的独特PROM工具。患者参与的最常见方法是通过定性访谈或焦点小组。
尽管国际组织提出了建议，且强调在PROMs开发的各个阶段纳入患者反馈的重要性，但很少有独特的工具在特定癌症工具的条目生成中纳入患者意见。展望未来，需要一个关于如何在开发PROMs时最佳地让患者参与的最佳实践框架，以支持高质量的以患者为中心的护理。
