scholarly journals Acceptance, Usage, and Barriers of Electronic Patient-Reported Outcomes Among German Rheumatologists: Survey Study (Preprint)

2020 ◽  
Author(s):  
Martin Krusche ◽  
Philipp Klemm ◽  
Manuel Grahammer ◽  
Johanna Mucke ◽  
Diana Vossen ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Online Survey ◽  
Data Transfer ◽  
German Society ◽  
Survey Study ◽  
Routine Practice ◽  
Full Potential ◽  
Patient Centered ◽  
Seamless Integration ◽  
Patient Reported

BACKGROUND The use of patient-reported outcomes (PROs) allows for patient-centered, measurable, and transparent care. Electronic PROs (ePROs) have many benefits and hold great potential to improve current usage of PROs, yet limited evidence exists regarding their acceptance, usage, and barriers among rheumatologists. OBJECTIVE This study aims to evaluate the current level of acceptance, usage, and barriers among German rheumatologists regarding the use of ePROs. The importance of different ePRO features for rheumatologists was investigated. Additionally, the most frequently used PROs for patients with rheumatoid arthritis (RA) were identified. METHODS Data were collected via an online survey consisting of 18 questions. The survey was completed by members of the Working Group Young Rheumatology of the German Society for Rheumatology (Arbeitsgemeinschaft Junge Rheumatologie der Deutschen Gesellschaft für Rheumatologie [DGRh]) at the 2019 annual DGRh conference. Only members currently working in clinical adult rheumatology were eligible to complete the survey. RESULTS A total of 119 rheumatologists completed the survey, of which 107 (89.9%) reported collecting PROs in routine practice and 28 (25.5%) already used ePROs. Additionally, 44% (43/97) were planning to switch to ePROs in the near future. The most commonly cited reason for not switching was the unawareness of suitable software solutions. Respondents were asked to rate the features of ePROs on a scale of 0 to 100 (0=unimportant, 100=important). The most important features were automatic score calculation and display (mean 77.50) and simple data transfer to medical reports (mean 76.90). When asked about PROs in RA, the respondents listed pain, morning stiffness, and patient global assessment as the most frequently used PROs. CONCLUSIONS The potential of ePROs is widely seen and there is great interest in them. Despite this, only a minority of physicians use ePROs, and the main reason for not implementing them was cited as the unawareness of suitable software solutions. Developers, patients, and rheumatologists should work closely together to help realize the full potential of ePROs and ensure a seamless integration into clinical practice.

scholarly journals Acceptance, Usage, and Barriers of Electronic Patient-Reported Outcomes Among German Rheumatologists: Survey Study

10.2196/18117 ◽  
2020 ◽  
Vol 8 (7) ◽  
pp. e18117 ◽  
Author(s):  
Martin Krusche ◽  
Philipp Klemm ◽  
Manuel Grahammer ◽  
Johanna Mucke ◽  
Diana Vossen ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Online Survey ◽  
Data Transfer ◽  
German Society ◽  
Survey Study ◽  
Routine Practice ◽  
Full Potential ◽  
Patient Centered ◽  
Seamless Integration ◽  
Patient Reported

Background The use of patient-reported outcomes (PROs) allows for patient-centered, measurable, and transparent care. Electronic PROs (ePROs) have many benefits and hold great potential to improve current usage of PROs, yet limited evidence exists regarding their acceptance, usage, and barriers among rheumatologists. Objective This study aims to evaluate the current level of acceptance, usage, and barriers among German rheumatologists regarding the use of ePROs. The importance of different ePRO features for rheumatologists was investigated. Additionally, the most frequently used PROs for patients with rheumatoid arthritis (RA) were identified. Methods Data were collected via an online survey consisting of 18 questions. The survey was completed by members of the Working Group Young Rheumatology of the German Society for Rheumatology (Arbeitsgemeinschaft Junge Rheumatologie der Deutschen Gesellschaft für Rheumatologie [DGRh]) at the 2019 annual DGRh conference. Only members currently working in clinical adult rheumatology were eligible to complete the survey. Results A total of 119 rheumatologists completed the survey, of which 107 (89.9%) reported collecting PROs in routine practice and 28 (25.5%) already used ePROs. Additionally, 44% (43/97) were planning to switch to ePROs in the near future. The most commonly cited reason for not switching was the unawareness of suitable software solutions. Respondents were asked to rate the features of ePROs on a scale of 0 to 100 (0=unimportant, 100=important). The most important features were automatic score calculation and display (mean 77.50) and simple data transfer to medical reports (mean 76.90). When asked about PROs in RA, the respondents listed pain, morning stiffness, and patient global assessment as the most frequently used PROs. Conclusions The potential of ePROs is widely seen and there is great interest in them. Despite this, only a minority of physicians use ePROs, and the main reason for not implementing them was cited as the unawareness of suitable software solutions. Developers, patients, and rheumatologists should work closely together to help realize the full potential of ePROs and ensure a seamless integration into clinical practice.

scholarly journals THU0625-HPR ELECTRONIC PATIENT-REPORTED OUTCOMES: A SURVEY ABOUT ACCEPTANCE, USAGE AND BARRIERS AMONG GERMAN RHEUMATOLOGISTS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 555.1-556
Author(s):  
M. Krusche ◽  
P. Klemm ◽  
M. Grahammer ◽  
J. Mucke ◽  
D. Vossen ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Patient Reported Outcomes ◽  
Internal Quality ◽  
Critical Threshold ◽  
Routine Practice ◽  
Full Potential ◽  
Research Support ◽  
Seamless Integration ◽  
Deutschland Gmbh ◽  
Patient Reported

Background:The use of patient-reported outcomes (PROs) allows for patient-centered, measurable and transparent care. Electronic PROs (ePROs) have many benefits and hold great potential to improve current usage of PROs; yet, limited evidence exists regarding acceptance, usage and barriers among rheumatologists.Objectives:This study aimed to evaluate the current level of acceptance, usage, and barriers among German rheumatologists regarding the utilization of ePROs. The importance of different ePRO features for rheumatologists was investigated. Additionally, the most frequently used PROs for patients with rheumatoid arthritis (RA) were identifiedMethods:Data was collected via an online survey consisting of 18 questions. The survey was completed by members of the Working Group Young Rheumatologists of the German Society for Rheumatology (Deutsche Gesellschaft für Rheumatologie (DGRh)) at the annual 2019 DGRh conference. Only members currently working in clinical rheumatology were eligible to complete the survey.Results:A total of 119 rheumatologists completed the survey. 90% reported collecting PROs in routine practice and 25.5% already used ePROs. 44.3% were planning to switch to ePROs in the near future.The main reason for collecting PROs was for clinical decision making (66.4%), followed by research (39.5%), reimbursement (23.5%), internal quality management (21.9%) and patient satisfaction (16.8%). The most commonly cited reason for not switching to ePROs was the unawareness of suitable software solutions (figure 1).Respondents were asked to rate the features for ePROs on a scale of 0-100 (0 = unimportant, 100 = important). The most important features were automatic score calculation and display (score: 77.5), as well as the simple data transfer to medical reports (76.9) (table 1).When asked about PROs in RA, the respondents listed pain, morning stiffness and physician global assessment (PGA) as the most frequently used PROs (figure 2).Table 1.Ratings for features of ePRO on a scale of 0-100 (0 = unimportant, 100 = important))QuestionmeanSDHow important would the graphic display be to you for ePROs?63.531.19How important would the automatic score calculation and display of ePROs be to you?77.527.64How important would the simple transfer of the ePROs in medical report be to you?76.930.07How important would an automatic alarm of yourself be for you if a critical threshold is exceeded by an ePRO?51.6533.5How important would an automatic alarm of the patient be for you if a critical threshold is exceeded by an ePRO?34.5530.61Figure 1.Reasons why ePROs are currently not used (multiple answers were possible for question)Figure 2.PROs being used in clinical practice and their respective frequencyConclusion:The potential of ePROs is widely seen, and there is a great interest in ePROs. Despite this, a minority of physicians only uses ePROs, and the main reason for not implementing was cited as the unawareness of suitable software solutions.Developers, patients and rheumatologists should work closely together to help realize the full potential of ePROs and ensure a seamless integration into clinical practice.Disclosure of Interests:Martin Krusche Consultant of: Sanofi, Novartis and Medac, Speakers bureau: Roche/Chugai, Novartis, Sobi,, Philipp Klemm Consultant of: Lilly, Medac, Manuel Grahammer Shareholder of: MG is MD and shareholder of Abaton GmbH, Johanna Mucke: None declared, Diana Vossen Consultant of: Medac, Novartis, Abvie, Speakers bureau: Abvie, BMS, Arnd Kleyer Consultant of: Lilly, Gilead, Novartis,Abbvie, Speakers bureau: Novartis, Lilly, Philipp Sewerin Grant/research support from: AbbVie Deutschland GmbH & Co. KGBristol-Myers Squibb Celgene GmbHLilly Deutschland GmbHNovartis Pharma GmbH Pfizer Deutschland GmbHRheumazentrum Rhein-Ruhr, Consultant of: AMGEN GmbH AbbVie Deutschland GmbH & Co. KG Biogen GmbHBristol-Myers Squibb Celgene GmbH Chugai Pharma arketing Ltd. / Chugai Europe GmbHHexal Pharma Janssen-CilagGmbH Johnson & Johnson Deutschland GmbHLilly Deutschland GmbH / Lilly Europe / Lilly Global Novartis Pharma GmbH Pfizer Deutschland GmbH Roche Pharma Rheumazentrum Rhein-Ruhr Sanofi-Genzyme Deutschland GmbH Swedish Orphan Biovitrum GmbH UCB Pharma GmbH, Speakers bureau: AMGEN GmbH AbbVie Deutschland GmbH & Co. KG Biogen GmbHBristol-Myers Squibb Celgene GmbH Chugai Pharma arketing Ltd. / Chugai Europe GmbHHexal Pharma Janssen-CilagGmbH Johnson & Johnson Deutschland GmbHLilly Deutschland GmbH / Lilly Europe / Lilly Global Novartis Pharma GmbH Pfizer Deutschland GmbH Roche Pharma Rheumazentrum Rhein-Ruhr Sanofi-Genzyme Deutschland GmbH Swedish Orphan Biovitrum GmbH UCB Pharma GmbH, Johannes Knitza Grant/research support from: Research Grant: Novartis

Using Patient-Reported Outcomes in Routine Practice

2015 ◽  
Vol 38 (2) ◽  
pp. 188-195 ◽  
Author(s):  
Helena Hvitfeldt Forsberg ◽  
Eugene C. Nelson ◽  
Robert Reid ◽  
David Grossman ◽  
Melanie P. Mastanduno ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Routine Practice ◽  
Patient Reported

scholarly journals Patient-Reported Outcomes Measures: An Introduction for Clinicians

2019 ◽  
Vol 4 (1) ◽  
pp. 8-15 ◽  
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.

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

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.

Health Literacy and Patient -Reported Outcomes

2018 ◽  
pp. 109-123 ◽  
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.

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

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.

scholarly journals Provider perspectives on the integration of patient-reported outcomes in an electronic health record

JAMIA Open ◽  
2019 ◽  
Vol 2 (1) ◽  
pp. 73-80 ◽  
Author(s):  
Renwen Zhang ◽  
Eleanor R Burgess ◽  
Madhu C Reddy ◽  
Nan E Rothrock ◽  
Surabhi Bhatt ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Care Delivery ◽  
Psychosocial Care ◽  
Organizational Factors ◽  
Full Potential ◽  
Clinical Workflow ◽  
Provider Perspectives ◽  
Patient Reported ◽  
Individual Needs ◽  
Electronic Health

Abstract Objective Integrating patient-reported outcomes (PROs) into electronic health records (EHRs) can improve patient-provider communication and delivery of care. However, new system implementation in health-care institutions is often accompanied by a change in clinical workflow and organizational culture. This study examines how well an EHR-integrated PRO system fits clinical workflows and individual needs of different provider groups within 2 clinics. Materials and Methods Northwestern Medicine developed and implemented an EHR-integrated PRO system within the orthopedics and oncology departments. We conducted interviews with 11 providers who had interacted with the system. Through thematic analysis, we synthesized themes regarding provider perspectives on clinical workflow, individual needs, and system features. Results Our findings show that EHR-integrated PROs facilitate targeted conversation with patients and automated triage for psychosocial care. However, physicians, psychosocial providers, and medical assistants faced different challenges in their use of the PRO system. Barriers mainly stemmed from a lack of actionable data, workflow disruption, technical issues, and a lack of incentives. Discussion This study sheds light on the ecosystem around EHR-integrated PRO systems (such as user needs and organizational factors). We present recommendations to address challenges facing PRO implementation, such as optimizing data collection and auto-referral processes, improving data visualizations, designing effective educational materials, and prioritizing the primary user group. Conclusion PRO integration into routine care can be beneficial but also require effective technology design and workflow configuration to reach full potential use. This study provides insights into how patient-generated health data can be better integrated into clinical practice and care delivery processes.

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