{"title":"癌症临床试验中患者的心路历程：经验与观点的定性荟萃","authors":"Mariam Chichua , Davide Mazzoni , Chiara Marzorati , Gabriella Pravettoni","doi":"10.1016/j.pec.2024.108469","DOIUrl":null,"url":null,"abstract":"<div><h3>Objective</h3><div>To synthesize findings from qualitative studies focusing on adult cancer patients and their experiences and perspectives on clinical trials.</div></div><div><h3>Methods</h3><div>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.</div></div><div><h3>Results</h3><div>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.</div></div><div><h3>Conclusion</h3><div>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.</div></div><div><h3>Practice implications</h3><div>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.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"130 ","pages":"Article 108469"},"PeriodicalIF":2.9000,"publicationDate":"2024-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"The journey of patients in cancer clinical trials: A qualitative meta-synthesis on experiences and perspectives\",\"authors\":\"Mariam Chichua , Davide Mazzoni , Chiara Marzorati , Gabriella Pravettoni\",\"doi\":\"10.1016/j.pec.2024.108469\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Objective</h3><div>To synthesize findings from qualitative studies focusing on adult cancer patients and their experiences and perspectives on clinical trials.</div></div><div><h3>Methods</h3><div>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.</div></div><div><h3>Results</h3><div>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.</div></div><div><h3>Conclusion</h3><div>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.</div></div><div><h3>Practice implications</h3><div>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.</div></div>\",\"PeriodicalId\":49714,\"journal\":{\"name\":\"Patient Education and Counseling\",\"volume\":\"130 \",\"pages\":\"Article 108469\"},\"PeriodicalIF\":2.9000,\"publicationDate\":\"2024-10-13\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Patient Education and Counseling\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S0738399124003367\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Patient Education and Counseling","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0738399124003367","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH","Score":null,"Total":0}
The journey of patients in cancer clinical trials: A qualitative meta-synthesis on experiences and perspectives
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.
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.
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