The journey of patients in cancer clinical trials: A qualitative meta-synthesis on experiences and perspectives

IF 2.9 2区医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Patient Education and Counseling Pub Date : 2024-10-13 DOI:10.1016/j.pec.2024.108469

Mariam Chichua , Davide Mazzoni , Chiara Marzorati , Gabriella Pravettoni

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Abstract

Objective

To synthesize findings from qualitative studies focusing on adult cancer patients and their experiences and perspectives on clinical trials.

Methods

A meta-synthesis was conducted on the literature retrieved from Scopus, Embase, PubMed, and PsycInfo databases. Patient quotes from papers were coded line-by-line using Nvivo software, and themes were created.

Results

45 papers were included. Three large themes were identified based on the timeline of trials: (1) “pre-trial participation” includes sub-themes regarding informational needs, experience with the decision, and representations. (2) “Ongoing trial” includes subthemes covering supportive care, practical and psycho-physical burdens, identity and comparison with others, and the importance of maintaining hope. (3) “Post-trial,” with subthemes covering comprehension of results and attitudes towards data sharing, perception of being left unattended, and hindsight and regretful thoughts.

Conclusion

This work emphasizes the importance of contextualizing patient experiences and holistically viewing trials. Additionally, this review stresses that patient narratives in the post-trial period are underrepresented in the literature.

Practice implications

Further research should prioritize the post-trial stage to enhance patients' psychological well-being and address concerns such as regret to reduce trial dropout rates. Emphasizing patient connections, providing clear trial-related information, and offering remote participation options, particularly for rural patients, are crucial steps in improving patient experience and trial adherence.

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癌症临床试验中患者的心路历程：经验与观点的定性荟萃

目的综述以成年癌症患者为研究对象的定性研究结果及其对临床试验的体验和看法。使用 Nvivo 软件对论文中的患者引文进行逐行编码，并创建主题。根据试验的时间轴确定了三个大主题：（1）"试验前参与 "包括有关信息需求、决定经验和代表性的子主题。(2) "正在进行的试验 "包括支持性护理、实际和心理生理负担、身份认同和与他人的比较以及保持希望的重要性等子主题。(3) "试验后"，子主题包括对结果的理解和对数据共享的态度、对无人照管的感知以及事后诸葛亮和后悔的想法。实践意义进一步的研究应优先考虑试验后阶段，以提高患者的心理健康水平并解决遗憾等问题，从而降低试验退出率。强调与患者的联系、提供明确的试验相关信息以及提供远程参与选择（尤其是针对农村患者）是改善患者体验和试验依从性的关键步骤。

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来源期刊

Patient Education and Counseling 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.60

自引率

11.40%

发文量

384

审稿时长

46 days

期刊介绍： Patient Education and Counseling is an interdisciplinary, international journal for patient education and health promotion researchers, managers and clinicians. The journal seeks to explore and elucidate the educational, counseling and communication models in health care. Its aim is to provide a forum for fundamental as well as applied research, and to promote the study of organizational issues involved with the delivery of patient education, counseling, health promotion services and training models in improving communication between providers and patients.