L. Dörner, L. Grosse, F. Stange, H. Hille, S. Kurz, H. Becker, Sebastian Volkmer, M. Hippler, D. Rieger, Paula Bombach, J. Rieger, Lina Weinert, Laura Svensson, Carolin Anders, Sila Cekin, F. Paulsen, Ö. Öner, K. Ruhm, Holly Sundberg Malek, Y. Möller, M. Tatagiba, M. Wallwiener, Nils Eckert, P. Escher, Nico Pfeifer, A. Forschner, A. Bauer, Daniel Zips, M. Bitzer, N. Malek, Cihan Gani, G. Tabatabai, M. Renovanz
{"title":"个性化医学中心分子肿瘤委员会基于应用程序的患者报告结果评估--(TRACE)","authors":"L. Dörner, L. Grosse, F. Stange, H. Hille, S. Kurz, H. Becker, Sebastian Volkmer, M. Hippler, D. Rieger, Paula Bombach, J. Rieger, Lina Weinert, Laura Svensson, Carolin Anders, Sila Cekin, F. Paulsen, Ö. Öner, K. Ruhm, Holly Sundberg Malek, Y. Möller, M. Tatagiba, M. Wallwiener, Nils Eckert, P. Escher, Nico Pfeifer, A. Forschner, A. Bauer, Daniel Zips, M. Bitzer, N. Malek, Cihan Gani, G. Tabatabai, M. Renovanz","doi":"10.1093/nop/npae002","DOIUrl":null,"url":null,"abstract":"\n \n \n Biomarker-based therapies are increasingly used in cancer patients outside clinical trials. Systematic assessment of patient-reported outcomes (PRO) is warranted to take patients’ perspective during biomarker-based therapies into consideration. We assessed feasibility of an electronic PRO assessment via a smartphone application.\n \n \n \n An interdisciplinary expert panel developed a smartphone application based on symptom burden and health-related quality of life (HRQoL) metrics reported in a retrospective analysis in 292 neuro-oncological patients. The app included validated assessments of health-related quality of life (HRQoL), burden of symptoms and psychological stress. Feasibility and usability were tested in a pilot study.\n Semi-structured interviews with patients and health care professionals (HCP) were conducted, transcribed and analyzed according to Mayring´s qualitative content analysis. Furthermore, we assessed compliance and descriptive data of ePROs.\n \n \n \n A total of 14 patients have been enrolled, (9 female, 5 male). A total of 4 HCPs, 9 patients and one caregiver were interviewed regarding usability/feasibility. Main advantages were the possibility to complete questionnaires at home and comfortable implementation in daily life. Compliance was high, e.g., 82% of the weekly distributed NCCN Distress Thermometer questionnaires were answered on time, however, with interindividual variability We observed a median distress score of 5 (range 0-10, 197 results, n=12, weekly assessed) and a median Global health score of 58.3 according to the EORTC QLQ-C30 instrument (range 16.7-100, 77 results, n=12, monthly assessed).\n \n \n \n This pilot study proved feasibility and acceptance of the app. We will therefore expand its application during biomarker-guided therapies to enable systematic PRO assessments.\n","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":null,"pages":null},"PeriodicalIF":2.4000,"publicationDate":"2024-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"App-based assessment of patient-reported outcomes in the Molecular Tumor Board in the Center for Personalized Medicine - (TRACE)\",\"authors\":\"L. Dörner, L. Grosse, F. Stange, H. Hille, S. Kurz, H. Becker, Sebastian Volkmer, M. Hippler, D. Rieger, Paula Bombach, J. Rieger, Lina Weinert, Laura Svensson, Carolin Anders, Sila Cekin, F. Paulsen, Ö. Öner, K. Ruhm, Holly Sundberg Malek, Y. Möller, M. Tatagiba, M. Wallwiener, Nils Eckert, P. Escher, Nico Pfeifer, A. Forschner, A. Bauer, Daniel Zips, M. Bitzer, N. Malek, Cihan Gani, G. Tabatabai, M. Renovanz\",\"doi\":\"10.1093/nop/npae002\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"\\n \\n \\n Biomarker-based therapies are increasingly used in cancer patients outside clinical trials. Systematic assessment of patient-reported outcomes (PRO) is warranted to take patients’ perspective during biomarker-based therapies into consideration. We assessed feasibility of an electronic PRO assessment via a smartphone application.\\n \\n \\n \\n An interdisciplinary expert panel developed a smartphone application based on symptom burden and health-related quality of life (HRQoL) metrics reported in a retrospective analysis in 292 neuro-oncological patients. The app included validated assessments of health-related quality of life (HRQoL), burden of symptoms and psychological stress. Feasibility and usability were tested in a pilot study.\\n Semi-structured interviews with patients and health care professionals (HCP) were conducted, transcribed and analyzed according to Mayring´s qualitative content analysis. Furthermore, we assessed compliance and descriptive data of ePROs.\\n \\n \\n \\n A total of 14 patients have been enrolled, (9 female, 5 male). A total of 4 HCPs, 9 patients and one caregiver were interviewed regarding usability/feasibility. Main advantages were the possibility to complete questionnaires at home and comfortable implementation in daily life. Compliance was high, e.g., 82% of the weekly distributed NCCN Distress Thermometer questionnaires were answered on time, however, with interindividual variability We observed a median distress score of 5 (range 0-10, 197 results, n=12, weekly assessed) and a median Global health score of 58.3 according to the EORTC QLQ-C30 instrument (range 16.7-100, 77 results, n=12, monthly assessed).\\n \\n \\n \\n This pilot study proved feasibility and acceptance of the app. We will therefore expand its application during biomarker-guided therapies to enable systematic PRO assessments.\\n\",\"PeriodicalId\":19234,\"journal\":{\"name\":\"Neuro-oncology practice\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.4000,\"publicationDate\":\"2024-01-20\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Neuro-oncology practice\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1093/nop/npae002\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Neuro-oncology practice","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1093/nop/npae002","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
App-based assessment of patient-reported outcomes in the Molecular Tumor Board in the Center for Personalized Medicine - (TRACE)
Biomarker-based therapies are increasingly used in cancer patients outside clinical trials. Systematic assessment of patient-reported outcomes (PRO) is warranted to take patients’ perspective during biomarker-based therapies into consideration. We assessed feasibility of an electronic PRO assessment via a smartphone application.
An interdisciplinary expert panel developed a smartphone application based on symptom burden and health-related quality of life (HRQoL) metrics reported in a retrospective analysis in 292 neuro-oncological patients. The app included validated assessments of health-related quality of life (HRQoL), burden of symptoms and psychological stress. Feasibility and usability were tested in a pilot study.
Semi-structured interviews with patients and health care professionals (HCP) were conducted, transcribed and analyzed according to Mayring´s qualitative content analysis. Furthermore, we assessed compliance and descriptive data of ePROs.
A total of 14 patients have been enrolled, (9 female, 5 male). A total of 4 HCPs, 9 patients and one caregiver were interviewed regarding usability/feasibility. Main advantages were the possibility to complete questionnaires at home and comfortable implementation in daily life. Compliance was high, e.g., 82% of the weekly distributed NCCN Distress Thermometer questionnaires were answered on time, however, with interindividual variability We observed a median distress score of 5 (range 0-10, 197 results, n=12, weekly assessed) and a median Global health score of 58.3 according to the EORTC QLQ-C30 instrument (range 16.7-100, 77 results, n=12, monthly assessed).
This pilot study proved feasibility and acceptance of the app. We will therefore expand its application during biomarker-guided therapies to enable systematic PRO assessments.
期刊介绍:
Neuro-Oncology Practice focuses on the clinical aspects of the subspecialty for practicing clinicians and healthcare specialists from a variety of disciplines including physicians, nurses, physical/occupational therapists, neuropsychologists, and palliative care specialists, who have focused their careers on clinical patient care and who want to apply the latest treatment advances to their practice. These include: Applying new trial results to improve standards of patient care Translating scientific advances such as tumor molecular profiling and advanced imaging into clinical treatment decision making and personalized brain tumor therapies Raising awareness of basic, translational and clinical research in areas of symptom management, survivorship, neurocognitive function, end of life issues and caregiving