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Integrating Patient-Reported Outcome Measures (PROMs) into Molecular Tumor Boards (MTBs) remains challenging due to the complexity of data visualization and integration into clinical workflows. This work, as part of the German PM4Onco project, aims to identify visualization requirements for PROMs and develop a prototype for PROMs integration in cBioPortal, facilitating broader application within oncology care. We employed a qualitative research approach, including developing personas for MTB stakeholders, conducting a literature-based requirements analysis, organizing a co-design workshop to create low-fidelity prototypes, and evaluating the highest-rated prototype variant through an online survey distributed to MTB physicians across Germany. Seven specialist groups were identified, with key needs including intuitive visualization, clear axis labeling, and longitudinal symptom tracking. The resulting mid-fidelity mockup incorporated PROMs data within cBioPortal's timeline view and a detailed PROMs tab, featuring trend indicators, line graphs, and customizable health displays. Usability evaluation by MTB members yielded a SUS score of 67, indicating an initial indicator of acceptable usability, with suggestions for improvements like threshold scores and deeper clinical data integration. While PROMs offer critical patient insights, they remain underused in MTBs. Our early-stage prototype demonstrates potential for addressing this gap, with future work focusing on implementation, broader testing, and international validation.
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http://dx.doi.org/10.1038/s41698-025-01061-x | DOI Listing |
Lung Cancer
August 2025
Department of Pulmonary Diseases, University Medical Center Utrecht, Utrecht, the Netherlands. Electronic address:
The Dutch Thoracic Oncology Cohort (DuTOC) is a nationwide cohort for patients with thoracic malignancies collecting patient characteristics, quality of life and biomaterials after informed consent of the patient. With this data and material DuTOC is a solid infrastructure for retrospective and prospective studies involving treatment, (molecular) diagnostics, quality control, biomarkers and translational research and quality of life. DuTOC is initiated by the Dutch Association of Pulmonologists and is a collaboration of all clinicians involved in cancer-care and other stakeholders in the field of thoracic malignancies such as patient advocacies, health regulatory agencies, cancer registries and pharmaceutical companies.
View Article and Find Full Text PDFPediatr Nephrol
August 2025
Department of General Pediatrics, University Children's Hospital Münster, Waldeyerstraße 22, 48149, Münster, Germany.
Background: Nephronophthisis (NPH) is a rare hereditary cystic kidney disease, characterized by a highly variable clinical and genetic presentation, accounting for up to 10% of kidney failure in children. Despite advances in understanding its molecular basis and phenotypic spectrum, no causative therapies exist, and clinical trials remain absent. To support future treatment development, patient-reported outcome measures (PROMs) tailored to NPH should be defined to prioritize outcomes meaningful to patients and families.
View Article and Find Full Text PDFCartilage
August 2025
High-Field MR Centre, Department of Biomedical Imaging and Image-Guided Therapy, Medical University of Vienna, Vienna, Austria.
ObjectivesCartilage repair (CR) surgery and anterior cruciate ligament reconstruction (ACL-R) are common joint procedures, particularly in younger patients. However, the impact of prior or concurrent ACL-R on the outcomes of CR remains uncertain. This study aimed to evaluate whether ACL-R affects the structural quality and clinical outcomes of CR tissue.
View Article and Find Full Text PDFNPJ Precis Oncol
August 2025
Institute for Medical Informatics and Biometry, Faculty of Medicine and University Hospital Carl Gustav Carus, TUD Dresden University of Technology, Dresden, Germany.
Integrating Patient-Reported Outcome Measures (PROMs) into Molecular Tumor Boards (MTBs) remains challenging due to the complexity of data visualization and integration into clinical workflows. This work, as part of the German PM4Onco project, aims to identify visualization requirements for PROMs and develop a prototype for PROMs integration in cBioPortal, facilitating broader application within oncology care. We employed a qualitative research approach, including developing personas for MTB stakeholders, conducting a literature-based requirements analysis, organizing a co-design workshop to create low-fidelity prototypes, and evaluating the highest-rated prototype variant through an online survey distributed to MTB physicians across Germany.
View Article and Find Full Text PDFAmyotroph Lateral Scler Frontotemporal Degener
July 2025
Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK.
: Precision (how closely repeated measures match) and responsiveness (ability to detect change over time) are critical properties of patient reported outcome measures (PROMs). Smallest Detectable Difference (SDD) is a useful statistic regarding precision; Minimal Detectable Change (MDC) and Minimal Important Change (MIC) assess responsiveness. : We examined measurement properties of Numeric Rating Scale for Breathlessness, ALSFRS-R respiratory subscale and Dyspnea-12, contributed by participants in the Trajectories of Outcome in Neurological Conditions-ALS study.
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