Thiessen Maclean, Harris Daranne, Tang Patricia A, Bouchal Shelley Raffin, Sinclair Shane
Faculty of Nursing, University of Calgary, Calgary, AB, Canada.
Section of Oncology and Hematology, Department of Internal Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada.
Palliat Support Care. 2023 Sep 12:1-13. doi: 10.1017/S1478951523001232.
Information needs are one of the most common unmet supportive care needs of those living with cancer. Little is known about how existing tools for assessing information needs in the cancer context have been created or the role those with lived cancer experience played in their development.
This review aimed to characterize the development and intended use of existing cancer specific information needs assessment tools.
A systematic scoping review was conducted using a peer-reviewed protocol informed by recommendations from the Joanna Briggs Institute and the Prefered Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist.
Twenty-one information needs assessment tools were included. Most tools were either breast cancer ( = 8) or primary tumor nonspecific ( = 8). Patients and informal carers participated in initial identification of questionnaire items in the minority of cases ( = 6) and were more commonly involved in reviewing the final questionnaire before use or formal psychometric testing ( = 9). Most questionnaires were not assessed for validity or reliability using rigorous quantitative psychometric testing.
Existing tools are generally not designed to provide a rigorous assessment of informational needs related to a specific cancer challenge and are limited in how they have been informed by those with lived cancer experience. Tools are needed that both rigirously address information needs for specific cancer challenges and that have been developed in partnership with those who have experienced cancer. Future directions should include understanding barriers and facilitators to developing such tools.
信息需求是癌症患者最常见的未得到满足的支持性护理需求之一。对于癌症背景下现有的信息需求评估工具是如何创建的，以及有过癌症经历的人在其开发过程中所起的作用，人们知之甚少。
本综述旨在描述现有癌症特定信息需求评估工具的开发和预期用途。
采用系统的范围综述方法，使用由乔安娜·布里格斯研究所的建议和系统评价与Meta分析扩展的首选报告项目（PRISMA-ScR）清单提供信息的同行评审方案。
纳入了21种信息需求评估工具。大多数工具要么是针对乳腺癌的（n = 8），要么是原发性肿瘤非特异性的（n = 8）。在少数情况下（n = 6），患者和非正式护理人员参与了问卷项目的初步确定，并且在使用前或正式心理测量测试之前更常参与最终问卷的审核（n = 9）。大多数问卷没有使用严格的定量心理测量测试来评估其有效性或可靠性。
现有工具通常并非旨在对与特定癌症挑战相关的信息需求进行严格评估，并且在多大程度上受到有过癌症经历的人的影响方面存在局限性。需要既能严格满足特定癌症挑战的信息需求，又能与有过癌症经历的人合作开发的工具。未来的方向应包括了解开发此类工具的障碍和促进因素。
