Ronja Thallner, Christoph Gumbinger, Anja Hohmann, Antje Wick, Wolfgang Wick, Loraine Busetto
{"title":"患者、亲属和工作人员参与神经肿瘤学临床试验的经历:\"无论结局如何,也许你也能看到积极的一面\"。","authors":"Ronja Thallner, Christoph Gumbinger, Anja Hohmann, Antje Wick, Wolfgang Wick, Loraine Busetto","doi":"10.2147/CMAR.S447407","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>There is a lack of evidence regarding how patients with malignant brain tumor and their relatives experience participation in neurooncological clinical trials. Similarly, insights from the perspective of trial staff caring for this group of patients are missing. This study aims to investigate patient, relative and trial staff experiences regarding participation in clinical neurooncological trials.</p><p><strong>Methods: </strong>Within a qualitative exploratory study, 29 semi-structured interviews with brain tumor patients, relatives and trial staff were conducted and analyzed using reflexive thematic analysis (RTA) by Braun and Clarke. A patient researcher and patient council were involved in data analysis and interpretation.</p><p><strong>Results: </strong>Four themes were developed reflecting significant aspects of the trial experience: 1. \"It all revolves around hope\"; 2. \"Trial participation: experiencing unique medical care\"; 3. \"Everyone's roles are changing\"; 4. \"Communication as a possible area of conflict\". Experiencing trial participation and general medical treatment were found to be interconnected to such a degree that they were often not meaningfully distinguished by patients and relatives.</p><p><strong>Conclusion: </strong>In addition to assessing traditional endpoints for patient outcomes, we recommend increased emphasis on investigating the impact of the \"soft\" components constituting trial participation. Due to the interconnectedness of medical treatment and trial participation, we recommend further investigation in comparison to experiences in regular care. A deeper understanding of trial participation is needed to inform improvements for patient experiences and staff satisfaction alongside medical and scientific progress.</p>","PeriodicalId":9479,"journal":{"name":"Cancer Management and Research","volume":null,"pages":null},"PeriodicalIF":2.5000,"publicationDate":"2024-06-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11197948/pdf/","citationCount":"0","resultStr":"{\"title\":\"Patient, Relative and Staff Experiences of Clinical Trial Participation in Neurooncology: \\\"Maybe You Can Also Show the Positive, No Matter How It Ends\\\".\",\"authors\":\"Ronja Thallner, Christoph Gumbinger, Anja Hohmann, Antje Wick, Wolfgang Wick, Loraine Busetto\",\"doi\":\"10.2147/CMAR.S447407\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>There is a lack of evidence regarding how patients with malignant brain tumor and their relatives experience participation in neurooncological clinical trials. Similarly, insights from the perspective of trial staff caring for this group of patients are missing. This study aims to investigate patient, relative and trial staff experiences regarding participation in clinical neurooncological trials.</p><p><strong>Methods: </strong>Within a qualitative exploratory study, 29 semi-structured interviews with brain tumor patients, relatives and trial staff were conducted and analyzed using reflexive thematic analysis (RTA) by Braun and Clarke. A patient researcher and patient council were involved in data analysis and interpretation.</p><p><strong>Results: </strong>Four themes were developed reflecting significant aspects of the trial experience: 1. \\\"It all revolves around hope\\\"; 2. \\\"Trial participation: experiencing unique medical care\\\"; 3. \\\"Everyone's roles are changing\\\"; 4. \\\"Communication as a possible area of conflict\\\". Experiencing trial participation and general medical treatment were found to be interconnected to such a degree that they were often not meaningfully distinguished by patients and relatives.</p><p><strong>Conclusion: </strong>In addition to assessing traditional endpoints for patient outcomes, we recommend increased emphasis on investigating the impact of the \\\"soft\\\" components constituting trial participation. Due to the interconnectedness of medical treatment and trial participation, we recommend further investigation in comparison to experiences in regular care. A deeper understanding of trial participation is needed to inform improvements for patient experiences and staff satisfaction alongside medical and scientific progress.</p>\",\"PeriodicalId\":9479,\"journal\":{\"name\":\"Cancer Management and Research\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.5000,\"publicationDate\":\"2024-06-21\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11197948/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Cancer Management and Research\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.2147/CMAR.S447407\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/1/1 0:00:00\",\"PubModel\":\"eCollection\",\"JCR\":\"Q3\",\"JCRName\":\"ONCOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Cancer Management and Research","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.2147/CMAR.S447407","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/1/1 0:00:00","PubModel":"eCollection","JCR":"Q3","JCRName":"ONCOLOGY","Score":null,"Total":0}
Patient, Relative and Staff Experiences of Clinical Trial Participation in Neurooncology: "Maybe You Can Also Show the Positive, No Matter How It Ends".
Purpose: There is a lack of evidence regarding how patients with malignant brain tumor and their relatives experience participation in neurooncological clinical trials. Similarly, insights from the perspective of trial staff caring for this group of patients are missing. This study aims to investigate patient, relative and trial staff experiences regarding participation in clinical neurooncological trials.
Methods: Within a qualitative exploratory study, 29 semi-structured interviews with brain tumor patients, relatives and trial staff were conducted and analyzed using reflexive thematic analysis (RTA) by Braun and Clarke. A patient researcher and patient council were involved in data analysis and interpretation.
Results: Four themes were developed reflecting significant aspects of the trial experience: 1. "It all revolves around hope"; 2. "Trial participation: experiencing unique medical care"; 3. "Everyone's roles are changing"; 4. "Communication as a possible area of conflict". Experiencing trial participation and general medical treatment were found to be interconnected to such a degree that they were often not meaningfully distinguished by patients and relatives.
Conclusion: In addition to assessing traditional endpoints for patient outcomes, we recommend increased emphasis on investigating the impact of the "soft" components constituting trial participation. Due to the interconnectedness of medical treatment and trial participation, we recommend further investigation in comparison to experiences in regular care. A deeper understanding of trial participation is needed to inform improvements for patient experiences and staff satisfaction alongside medical and scientific progress.
期刊介绍:
Cancer Management and Research is an international, peer reviewed, open access journal focusing on cancer research and the optimal use of preventative and integrated treatment interventions to achieve improved outcomes, enhanced survival, and quality of life for cancer patients. Specific topics covered in the journal include:
◦Epidemiology, detection and screening
◦Cellular research and biomarkers
◦Identification of biotargets and agents with novel mechanisms of action
◦Optimal clinical use of existing anticancer agents, including combination therapies
◦Radiation and surgery
◦Palliative care
◦Patient adherence, quality of life, satisfaction
The journal welcomes submitted papers covering original research, basic science, clinical & epidemiological studies, reviews & evaluations, guidelines, expert opinion and commentary, and case series that shed novel insights on a disease or disease subtype.