App-based assessment of patient-reported outcomes in the Molecular Tumor Board in the Center for Personalized Medicine—(TRACE)

Author:

Dörner Lorenz123,Grosse Lucia123,Stange Felix123,Hille Hanni123,Kurz Sylvia123,Becker Hannes1234,Volkmer Sebastian123,Hippler Melina123,Rieger David123,Bombach Paula123,Rieger Johannes123,Weinert Lina56,Svensson Laura5,Anders Carolin5,Cekin Sila123,Paulsen Frank23,Öner Öznur3,Ruhm Kristina3,Malek Holly Sundberg3,Möller Yonne3,Tatagiba Marcos234,Wallwiener Markus7,Eckert Nils8,Escher Pascal910,Pfeifer Nico910,Forschner Andrea11,Bauer Armin12,Zips Daniel13ORCID,Bitzer Michael1415,Malek Nisar1415,Gani Cihan23,Tabatabai Ghazaleh12315,Renovanz Mirjam1234ORCID

Affiliation:

1. Department of Neurology & Interdisciplinary Neuro-Oncology, University Hospital Tübingen, Hertie Institute for Clinical Brain Research, Eberhard Karls University of Tübingen , Tübingen , Germany

2. Center for Neuro-Oncology, Comprehensive Cancer Center Tübingen-Stuttgart, University Hospital Tübingen, Eberhard Karls University of Tübingen , Tübingen , Germany

3. Center for Personalized Medicine Tübingen, University Hospital Tübingen, Eberhard Karls University of Tübingen , Tübingen , Germany

4. Department of Neurosurgery, University Hospital Tübingen, Eberhard Karls University of Tübingen , Tübingen , Germany

5. Institute of Medical Informatics, Heidelberg University Hospital , Heidelberg , Germany

6. Section for Translational Health Economics, Department for Conservative Dentistry, Heidelberg University Hospital , Heidelberg , Germany

7. Department of Gynecology, University Hospital Heidelberg, University Heidelberg , Heidelberg , Germany

8. Eckert & Partner — IT Consulting , Stuttgart , Germany

9. Department of Computer Science, Methods in Medical Informatics, Eberhard Karls University of Tübingen , Tübingen , Germany

10. Center for Innovative Care , Tübingen , Germany

11. Department of Dermatology, University Hospital Tübingen, Eberhard Karls University of Tübingen , Tübingen , Germany

12. Department of Women`s Health, University Hospital Tübingen, Eberhard Karls University of Tübingen , Tübingen , Germany

13. Department of Radiation Oncology, University Hospital Tübingen, Eberhard Karls University of Tübingen , Tübingen , Germany

14. Department of Internal Medicine I, University Hospital Tübingen, Eberhard Karls University of Tübingen , Tübingen , Germany

15. Cluster of Excellence (EXC 2180) “Image Guided and Functionally Instructed Tumor Therapies”, University Hospital Tübingen, Eberhard Karls University of Tübingen , Tübingen , Germany

Abstract

Abstract Background Biomarker-based therapies are increasingly used in cancer patients outside clinical trials. Systematic assessment of patient-reported outcomes (PRO) is warranted to take patients’ perspectives during biomarker-based therapies into consideration. We assessed the feasibility of an electronic PRO assessment via a smartphone application. Methods 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 of 292 neuro-oncological patients. The app included validated assessments of health-related quality of life (HRQoL), the 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. Results A total of 14 patients have been enrolled, (9 female, 5 male). A total of 4 HCPs, 9 patients, and 1 caregiver were interviewed regarding usability/feasibility. The main advantages were the possibility to complete questionnaires at home and comfortable implementation in daily life. Compliance was high, for example, 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). Conclusions This pilot study proved the feasibility and acceptance of the app. We will therefore expand its application during biomarker-guided therapies to enable systematic PRO assessments.

Funder

Baden-Wuerttemberg (Germany) Ministry of Science, Research and the Arts

Publisher

Oxford University Press (OUP)

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