Lu Hongru, Xie Juan, Gerido Lynette Hammond, Cheng Ying, Chen Ya, Sun Lizhu
School of Information Management, Nanjing University, Nanjing, China.
School of Information, Florida State University, Tallahassee, FL, United States.
J Med Internet Res. 2020 Jul 28;22(7):e17907. doi: 10.2196/17907.
Breast cancer has become one of the most frequently diagnosed carcinomas and the leading cause of cancer deaths. The substantial growth in the number of breast cancer patients has put great pressure on health services. Meanwhile, the information patients need has increased and become more complicated. Therefore, a comprehensive and in-depth understanding of their information needs is urgently needed to improve the quality of health care. However, previous studies related to the information needs of breast cancer patients have focused on different perspectives and have only contributed to individual results. A systematic review and synthesis of breast cancer patients' information needs is critical.
This paper aims to systematically identify, evaluate, and synthesize existing primary qualitative research on the information needs of breast cancer patients.
Web of Science, EBSCO, Scopus, ProQuest, PubMed, PsycINFO, The Cochrane Library, the Cumulative Index to Nursing and Allied Health Literature were searched on February 12 and July 9, 2019, to collect relevant studies. A Google Scholar search, interpersonal network recommendations, and reference chaining were also conducted. Eligible studies included qualitative or mixed-methods studies focusing on the information needs (across the cancer continuum) of breast cancer patients or their social networks. Subsequently, a Critical Appraisals Skills Programme checklist was used to assess the quality of included research. The results, findings, and discussions were extracted. Data analysis was guided by the theory-generating meta-synthesis and grounded theory approach.
Three themes, 19 categories, and 55 concepts emerged: (1) incentives (physical abnormality, inquiry from others, subjective norm, and problems during appointments); (2) types of information needs (prevention, etiology, diagnosis, clinical manifestation, treatment, prognosis, impact and resumption of normal life, scientific research, and social assistance); (3) moderating variables (attitudes, health literacy, demographic characteristics, disease status, as well as political and cultural environment). The studies revealed that the information needs of breast cancer patients were triggered by different incentives. Subsequently, the patients sought a variety of information among different stages of the cancer journey. Five types of variables were also found to moderate the formation of information needs.
This study contributes to a thorough model of information needs among breast cancer patients and provides practical suggestions for health and information professionals.
乳腺癌已成为最常被诊断出的癌症之一,也是癌症死亡的主要原因。乳腺癌患者数量的大幅增长给医疗服务带来了巨大压力。与此同时,患者所需的信息不断增加且变得更加复杂。因此,迫切需要全面深入地了解他们的信息需求,以提高医疗保健质量。然而,以往关于乳腺癌患者信息需求的研究侧重于不同视角,仅得出了个别结果。对乳腺癌患者信息需求进行系统综述和综合分析至关重要。
本文旨在系统识别、评估和综合现有的关于乳腺癌患者信息需求的原发性定性研究。
于2019年2月12日和7月9日检索了Web of Science、EBSCO、Scopus、ProQuest、PubMed、PsycINFO、Cochrane图书馆、护理学与健康相关文献累积索引,以收集相关研究。还进行了谷歌学术搜索、人际网络推荐和参考文献追溯。符合条件的研究包括侧重于乳腺癌患者或其社交网络(在癌症连续过程中)信息需求的定性或混合方法研究。随后,使用批判性评估技能计划清单来评估纳入研究的质量。提取结果、发现和讨论内容。数据分析以理论生成元综合法和扎根理论方法为指导。
出现了三个主题、19个类别和55个概念:(1)诱因(身体异常、他人询问、主观规范以及就诊期间的问题);(2)信息需求类型(预防、病因、诊断、临床表现、治疗、预后、对正常生活的影响及恢复、科研和社会援助);(3)调节变量(态度、健康素养、人口统计学特征、疾病状况以及政治和文化环境)。研究表明,乳腺癌患者的信息需求由不同诱因引发。随后,患者在癌症病程的不同阶段寻求各种信息。还发现有五种类型的变量调节信息需求的形成。
本研究有助于构建一个全面的乳腺癌患者信息需求模型,并为医疗和信息专业人员提供实用建议。