Imaging-based patient-reported outcomes (PROs) database: How we do it

Gyftopoulos, Soterios; Jacobs, Adam; Samim, Mohammad

doi:10.1007/s00256-020-03602-w

Cited by 2 publications

(2 citation statements)

References 20 publications

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“…Finally, there are concerns regarding data privacy and security. Time and energy are needed to ensure strict compliance with the committee framework and organizational policies and procedures [ 15 ].…”

Section: Discussionmentioning

confidence: 99%

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Improving the Understanding and Managing of the Quality of Life of Patients With Lung Cancer With Electronic Patient-Reported Outcome Measures: Scoping Review

Abejas¹,

Trullas²,

Sobral³

et al. 2023

J Med Internet Res

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Background Electronic patient-reported outcome measures (ePROMs) are essential to clinical practice and research. The growth of eHealth technologies has provided unprecedented opportunities to collect information systematically through ePROMs. Although they are widely used in scientific research, more evidence is needed to determine their use and implementation in daily clinical practice. For example, when diagnosed, patients with lung cancer are at an advanced stage of the disease. This entails tremendous burden because of high mortality and losses in the different dimensions of the human being. In this case, monitoring symptoms and other outcomes help improve the patient’s quality of life. Objective ePROMs offered unprecedented opportunities to collect information systematically. Our goal was to demonstrate that ePROMs are more useful in controlling patient symptoms, lung cancer, and overall survival than their alternatives, such as nonelectronic PROMs. Methods This exploratory review considered articles published between 2017 and 2022 identified through searches of PubMed, Scopus, Cochrane, CINAHL, and PsycINFO. We found 5097 articles; after removing the duplicates, we reduced them to 3315. After reading the summary, we were left with 56. Finally, after applying the exclusion criteria, we reviewed 12. The 5-step framework by Arksey and O’Malley was used to refine the initial search results with the following research questions: Do ePROMs help physician-patient communication? To what extent do they improve decision-making? Are institutions and their digitization policies barriers to or facilitators of this process? and What else is needed for routine implementation? Results This review included 12 articles. We found that ePROMs are an integrative and facilitative communication tool, highlighting their importance in the relationship between palliative care and medical oncology. ePROMs help assess patient symptoms and functionality more accurately and facilitate clinical decision-making. In addition, it allows for more precise predictions of overall patient survival and the adverse effects of their treatments. The main institutional obstacles are the initial investment, which can be costly, and the data protection policy. However, enablers included better funding through the development of telemedicine, support from institutional leaders to overcome resistance to change, and transparent policies to ensure the safe and secure use of ePROMs. Conclusions Routine collection of remote ePROMs is an effective and valuable strategy for providing real-time clinical feedback. In addition, it provides satisfaction to patients and professionals. Optimizing ePROMs in patients with lung cancer leads to a more accurate view of health outcomes and ensures quality patient follow-up. It also allows us to stratify patients based on their morbidity, creating specific follow-ups for their needs. However, data privacy and security are concerns when using ePROMs to ensure compliance with local entities. At least four barriers were identified: cost, complex programming within health systems, safety, and social and health literacy.

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Section: Discussionmentioning

confidence: 99%

“…PROMs provide essential information about the impact of a disease or treatment on the patient while complementing other, more traditional outcome information, such as survival and time to symptom resolution [ 15 ].…”

Section: Introductionmentioning

confidence: 99%