How to PROceed? Reviewing obstacles and perspectives in patient-centered digital care in radiation oncology

As the general public is increasing their online presence and is becoming confident with the digital infrastructure, an opportunity for patient-centered digital care has arisen. Electronic patient-reported outcomes, (e)PRO in short, may facilitate enhanced clinical management of radiation oncology patients. This might enable the physicians to take the initiative and counteract symptoms or undesired side effects before they aggravate and thus, reducing treatment-associated costs. In this article, we review the impetus for and modalities of (e)PRO-based data acquisition and handling in research and routine. We conclude that prospective and technical studies are needed to prove the clinical significance of (e)PROs to pave the way to monetary compensation and widespread application.

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Using electronic patient reported outcomes to identify gaps in quality of care in radiation oncology.

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.31_suppl.94 ◽

2017 ◽

Vol 35 (31_suppl) ◽

pp. 94-94

Author(s):

Celine Denise Marquez ◽

Steve E. Braunstein ◽

Olivier Morin ◽

Shannon E. Fogh

Keyword(s):

Quality Of Care ◽

Side Effects ◽

Radiation Oncology ◽

Patient Reported Outcomes ◽

Health Needs ◽

Patient Reported ◽

Patient Health ◽

Eortc Qlq C30 ◽

Eortc Qlq

94 Background: Improving quality of care involves identifying patient health needs and designing systems to meet those needs reliably. Within Radiation Oncology, patient health needs encompass measurable, physical quantities such as a reduction in tumor size, as well as subjective needs, as in freedom from pain. Patient reported outcomes (PRO) have the potential to identify subjective health needs and to guide treatment towards symptoms patients find most bothersome, thereby improving quality of care. Here we report the unmet health needs revealed by systematic electronic PRO data collection in a Radiation Oncology department. Methods: 50 consecutively treated patients for a variety of malignant and nonmalignant, primary and metastatic disease were surveyed within the CNS subdivision of a single Radiation Oncology department using electronic EORTC QLQ C30 or PRO-CTCAE CNS forms displayed on a touch screen tablet. Patients were then followed with PRO surveys at two additional time points, 1-2 weeks post radiotherapy treatment and again at one month. Results: Of 27 planned PRO CTCAE surveys of 9 patients, 22 (81%) were completed and available for evaluation. 6/9 (67%) of patients taking the PRO CTCAE reported “severe” or “very severe” side effects. The most commonly reported “severe” or “very severe” symptoms were fatigue (6/9, 67%), insomnia (3/9, 33%), anxiety (2/9, 22%), and sad/unhappy feelings (2/9, 22%). Of 123 planned EORTC QLQ C30 surveys of 41 patients, 109 (89%) were completed and accessible for evaluation. 38/41 (93%) of patients taking EORTC QLQ C30 reported side effects impacting their lives “quite a bit” or “very much”. The most common symptoms impacting patients “quite a bit” and/or “very much” were fatigue (25/41, 61%), pain (17/41, 41%), insomnia (15/41, 37%), and worry (14/41, 34%). Conclusions: Gaps that may exist between the quality of care we wish to provide and the care patients experience may be recognized and addressed by incorporating PROs into our standard clinical practice. Integrating electronic PROs into our clinical systems will help us to more reliably identify unmet patient health needs, personalize care, and respond to side effects and symptoms that are of the greatest concern to patients.

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In our patient‐centered era, it is time we gave patient‐reported outcomes their due

Cancer ◽

10.1002/cncr.32763 ◽

2020 ◽

Vol 126 (11) ◽

pp. 2592-2593 ◽

Cited By ~ 1

Author(s):

David Cella

Keyword(s):

Patient Reported Outcomes ◽

Patient Centered ◽

Patient Reported

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Patient-Reported Outcomes Measures: An Introduction for Clinicians

Perspectives of the ASHA Special Interest Groups ◽

10.1044/2018_pers-st-2018-0001 ◽

2019 ◽

Vol 4 (1) ◽

pp. 8-15 ◽

Cited By ~ 3

Author(s):

Kathryn Yorkston ◽

Carolyn Baylor

Keyword(s):

Instrument Development ◽

Patient Reported Outcomes ◽

Outcome Measurement ◽

Communication Disorders ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Patient Centered ◽

Outcomes Measures ◽

Patient Reported ◽

Measurement Tools

Patient-reported outcome measures contain information that comes directly from the patient without interpretation by anyone else. These measures are an important part of a clinicians' arsenal of assessment approaches and are critical in the development of patient-centered approaches to intervention. In this introduction to patient-reported outcome measurement tools, a history is provided of this approach to measurement and its place within the context of clinical research and practice. The process of instrument development and application will be reviewed, along with examples of measurement tools from the field of neurological communication disorders. This introduction is supplemented by references that provide interested readers with more detailed information.

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A Real-World Rheumatology Registry and Research Consortium: The German RHADAR Registry (Preprint)

10.2196/preprints.28164 ◽

2021 ◽

Author(s):

Stefan Kleinert ◽

Peter Bartz-Bazzanella ◽

Cay von der Decken ◽

Johannes Knitza ◽

Torsten Witte ◽

...

Keyword(s):

Real World ◽

Patient Reported Outcomes ◽

Closed Loop ◽

Musculoskeletal Diseases ◽

Closed Loop System ◽

Real World Data ◽

Patient Centered ◽

Patient Reported ◽

Integrated Medical Care ◽

Research Consortium

UNSTRUCTURED Real-world data is crucial to continuously improve patients' management with rheumatic and musculoskeletal diseases (RMD). The German RHADAR registry encompasses a network of rheumatologists and researchers in Germany providing pseudonymized real-world patient data and allowing a timely and continuous improvement in RMD patients' care. The RHADAR modules allow automated anamnesis and adaptive coordination of appointments regarding individual urgency levels. Further modules focus on the collection and integration of electronic patient-reported outcomes in between consultations. The digital RHADAR modules ultimately allow a patient-centered, adaptive approach to integrated medical care starting as early as possible in the disease course. Such a closed-loop system consisting of various modules along the whole patient pathway enables comprehensive and timely patient management in an unprecedented manner.

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Health Literacy and Patient -Reported Outcomes

Optimizing Health Literacy for Improved Clinical Practices - Advances in Medical Technologies and Clinical Practice ◽

10.4018/978-1-5225-4074-8.ch007 ◽

2018 ◽

pp. 109-123 ◽

Cited By ~ 2

Author(s):

Maria Irene Bellini ◽

Andre Kubler

Keyword(s):

Patient Reported Outcomes ◽

Assessment Tool ◽

Quality Care ◽

Care Quality ◽

Negative Effects ◽

Patient Centered ◽

Subjective Data ◽

Care Plans ◽

Patient Reported ◽

Satisfaction Rates

Modern healthcare needs to identify parameters for high-quality care. Quality improvement is the key for advancing in healthcare, and the new assessment tool shifts from a disease-centered outcome to a patient-centered outcome. Clinical outcome such as morbidity and mortality are directly connected and interdependent from patient-reported outcomes: well-informed patients who decide with their healthcare provider what treatment is best for them have better outcomes and higher patient satisfaction rates. These subjective data collected by rigorous, meaningful, and scientific methods and presented in a utilizable format can be used to create care objectives towards which both the surgeon and their patient can travel. Time has come to carry patient-centered outcomes from research into decision making and daily care plans. This chapter outlines a focus beyond life-prolonging therapy, aiming to minimize the negative effects of treatment, optimize quality of life, and align medical decisions with patient expectations.

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Dare voce ai pazienti nella ricerca sulle malattie rare e sui famaci orfani / Giving patients a voice in the rare diseases and orphan drugs research

Medicina e Morale ◽

10.4081/mem.2018.526 ◽

2018 ◽

Vol 67 (1) ◽

pp. 25-40

Author(s):

Elena Mancini ◽

Roberta Martina Zagarella

Keyword(s):

Clinical Trials ◽

Rare Diseases ◽

Patient Reported Outcomes ◽

Narrative Medicine ◽

Orphan Drugs ◽

New Drugs ◽

Patient Centered ◽

Patient Reported ◽

Critical Issues ◽

The Impact

L’articolo ha l’obiettivo di mettere in luce potenzialità e criticità dell’inclusione della prospettiva dei pazienti nella ricerca sulle malattie rare e sui farmaci orfani. A tal fine, nella prima parte, si propone un’analisi epistemologica dell’utilizzo dei racconti dell’esperienza individuale della malattia nella ricerca scientifica e nei trial clinici, facendo emergere, anche attraverso gli strumenti della medicina narrativa, le sfide teoriche e operative poste dall’inclusione della soggettività del paziente e del vissuto di malattia nonché l’importanza della valorizzazione della prospettiva del paziente, sia in generale sia nella ricerca sulle malattie rare e sui farmaci orfani. Nella seconda parte, il testo analizza in particolare il ruolo degli esiti riportati dai pazienti o Patient Reported Outcomes (PROs), misure per la valutazione complessiva della salute basate sulla prospettiva dei pazienti stessi, incentrandosi sulla sperimentazione clinica nel campo delle malattie rare. In questo contesto, infatti, i racconti di malattia, raccolti e valorizzati da fonti istituzionali e associazioni di pazienti, hanno contribuito a far emergere importanti questioni critiche e difficoltà nell’impiego di outcome centrati sul paziente nello sviluppo di nuovi farmaci e trattamenti, generando una serie di documenti e raccomandazioni relative al loro utilizzo per il benessere della comunità dei malati rari. ---------- This paper aims to highlight the potentiality and criticality of including patients’ perspective in rare diseases and orphan drugs research. In the first part, we propose an epistemological analysis of individual narrations of disease experience as they are used in scientific research and clinical trials. With the help of narrative medicine approach, this analysis points out theoretical and operational challenges of a perspective that includes patient’s subjectivity and illness experience. Furthermore, it reveals the significance of patients’ standpoints in general and in rare diseases as well as in the orphan drugs research. The second part of our article focuses on the role of the Patient reported Outcomes (PROs) – which are measures for the health’s overall assessment based on patient’s perspective – by investigating the impact on clinical trials for rare diseases. In this context, illness stories, which are collected and promoted by institutional sources and patients’ associations, contribute to underline important critical issues at stake in the employment of patient-centered outcomes both in new drugs and in the treatments development. Moreover, these stories are crucial to elaborate documents and recommendations concerning the use of PROs for the rare patients’ community welfare.

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