Preliminary Results of USA-European Field Trial on the Use of Patient-reported Measures in a Mobile Application and Potential Uses in Refugee Populations

2017 ◽  
Vol 41 (S1) ◽  
pp. S20-S21
Author(s):  
W. Narrow ◽  
V. Buwalda ◽  
J. McIntyre

IntroductionThe use of patient-reported outcome measures in psychiatric practices in the United States is still in its beginning phases. More research is need to determine the usefulness of such measures and the optimal methods to present them to patients and practitioners in routine care settings.ObjectivesThis presentation will describe the research plan for testing a group of patient-reported outcome measures using digital applications. Potential opportunities for use in underserved refugee populations will be presented.MethodsThe outcome measures were selected from those recommended in DSM-5 Section III, including cross-cutting symptom and disability measures. A user-friendly digital application was developed for data collection, synthesis, and presentation. The research plan has three phases: focus groups with patients and clinicians, piloting of methods, and the main study, a pragmatic trial comparing treatment outcomes using outcome measurement versus usual care.ResultsResults of the focus group sessions will be presented, along with changes made to the measures and the digital application in response to these results. Current status of the research project will be discussed.ConclusionsThe results of this research project will bring greater clarity to questions on the role of outcome measurements in improving quality of care and patient outcomes. With ever greater use of smart phones, tablets, and personal computers, digital technology has the potential to facilitate psychiatric assessment and treatment for underserved, difficult-to-reach populations such as refugees.Disclosure of interestThe authors have not supplied their declaration of competing interest.

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Theresa M. Coles ◽  
Adrian F. Hernandez ◽  
Bryce B. Reeve ◽  
Karon Cook ◽  
Michael C. Edwards ◽  
...  

Abstract Objectives There has been limited success in achieving integration of patient-reported outcomes (PROs) in clinical trials. We describe how stakeholders envision a solution to this challenge. Methods Stakeholders from academia, industry, non-profits, insurers, clinicians, and the Food and Drug Administration convened at a Think Tank meeting funded by the Duke Clinical Research Institute to discuss the challenges of incorporating PROs into clinical trials and how to address those challenges. Using examples from cardiovascular trials, this article describes a potential path forward with a focus on applications in the United States. Results Think Tank members identified one key challenge: a common understanding of the level of evidence that is necessary to support patient-reported outcome measures (PROMs) in trials. Think Tank participants discussed the possibility of creating general evidentiary standards depending upon contextual factors, but such guidelines could not be feasibly developed because many contextual factors are at play. The attendees posited that a more informative approach to PROM evidentiary standards would be to develop validity arguments akin to courtroom briefs, which would emphasize a compelling rationale (interpretation/use argument) to support a PROM within a specific context. Participants envisioned a future in which validity arguments would be publicly available via a repository, which would be indexed by contextual factors, clinical populations, and types of claims. Conclusions A publicly available repository would help stakeholders better understand what a community believes constitutes compelling support for a specific PROM in a trial. Our proposed strategy is expected to facilitate the incorporation of PROMs into cardiovascular clinical trials and trials in general.


2018 ◽  
Vol 46 (1) ◽  
pp. 106-111 ◽  
Author(s):  
Christopher A. Mecoli ◽  
Jin Kyun Park ◽  
Helene Alexanderson ◽  
Malin Regardt ◽  
Merrilee Needham ◽  
...  

Objective.Patient-reported outcome measures (PROM) that incorporate the patient perspective have not been well established in idiopathic inflammatory myopathies (IIM). As part of our goal to develop IIM-specific PROM, the Outcome Measures in Rheumatology (OMERACT) Myositis special interest group sought to determine which aspects of disease and its effects are important to patients and healthcare providers (HCP).Methods.Based on a prior qualitative content analysis of focus groups, an initial list of 24 candidate domains was constructed. We subsequently conducted an international survey to identify the importance of each of the 24 domains to be assessed in clinical research. Patients with IIM, their caregivers, and HCP treating IIM completed the survey.Results.In this survey, a total of 638 respondents completed the survey, consisting of 510 patients, 101 HCP, and 27 caregivers from 48 countries. Overall, patients were more likely to rank “fatigue,” “cognitive impact,” and “difficulty sleeping” higher compared with HCP, who ranked “joint symptoms,” “lung symptoms,” and “dysphagia” higher. Both patients and providers rated muscle symptoms as their top domain. In general, patients from different countries were in agreement on which domains were most important. One notable exception was that patients from Sweden and the Netherlands ranked lung symptoms significantly higher compared to other countries including the United States and Australia (mean weighted rankings of 2.86 and 2.04 vs 0.76 and 0.80, respectively; p < 0.0001).Conclusion.Substantial differences exist in how IIM is perceived by patients compared to HCP, with different domains prioritized. In contrast, patients’ ratings across the world were largely similar.


2020 ◽  
Vol 25 (3) ◽  
pp. 594-603
Author(s):  
Halina Flannery ◽  
Jenna Jacob

There is a growing drive to develop and implement patient-reported outcome measures within paediatric health services, particularly for young people living with chronic health conditions; however, there is little consensus on how best to do this in meaningful ways within psychological services working alongside medical teams. This reflective commentary considers some of the challenges of collecting psychological outcome measures in paediatric services and considers alternative approaches to making outcome measurement meaningful. All measures have their limitations; however, they become meaningless if they are not used in meaningful and considered ways with young people. Client-defined outcome measurement, such as goal-based outcome measures, alongside other types of measurement, can capture outcomes of meaning to young people living with chronic health conditions, and can enable them to feed into a shared decision-making process.


2014 ◽  
Vol 20 (3) ◽  
pp. 165-171 ◽  
Author(s):  
Glyn Lewis ◽  
Helen Killaspy

SummaryIt has been argued that the routine use of patient-reported outcome measures (PROMs) should be encouraged in order to improve the quality of services and even to determine payment. Clinician-rated outcome measures (CROMs), patient-reported experience measures (PREMs) and process measures also should be considered in evaluating healthcare quality. We discuss difficulties that the routine use of outcome measures might pose for psychiatric services. When outcome and experience measures are used to evaluate services they are difficult to interpret because of differences in case mix and regression to the mean. We conclude that PROMs and CROMs could be useful for monitoring the progress of individuals and that clinical audit still has an important role to play in improving the quality of services.LEARNING OBJECTIVESUnderstand the difference between process measurement and outcome measurement.Understand the limitation of using outcome measures to assess and promote quality of services.Understand the difficulties in assessing the psychometric properties and validity of outcome measures.


Physiotherapy ◽  
2017 ◽  
Vol 103 (1) ◽  
pp. 66-72 ◽  
Author(s):  
Simone A. van Dulmen ◽  
Philip J. van der Wees ◽  
J. Bart Staal ◽  
J.C.C. Braspenning ◽  
Maria W.G. Nijhuis-van der Sanden

2021 ◽  
Vol 108 (Supplement_4) ◽  
Author(s):  
M Bilici ◽  
M Morgenstern ◽  
C Frank ◽  
N Alispahic ◽  
A Müller ◽  
...  

Abstract Objective Patient-Reported Outcome Measures (PROMs) gain growing attention. The Food and Drug Administration suggested in 2009 to have PROMs for every new treatment and technology. The use of PROMs was further promoted by the Patient Protection and Affordable Care Act of 2010 in the USA. Recommendations from other national and international organizations include the OECD's Project of Patient-Reported Indicator Surveys (PaRIS) and the International Consortium for Health Outcomes Measurement (ICHOM). Our development and initiation of a Fracture Database started early in 2018. We orientated our database on the role model of the Swedish Fracture Registry. Methods REDCap (Research Electronic Data Capture) is a web interface for a SQL (Structured Query Language)-Database. We used it to program the Fracture Registry. We collect data about demographics, diagnosis, treatment, adverse events, clinical outcomes, and PROMs. The PROMS are recorded with the Software 'Heartbeat ONE' vs. 6.15.4. Inclusion criteria are all patients with fractures of the upper and lower extremity, including the pelvis and multiple injuries, treated surgically. Excluded are all patients with fractures of the hand as monotrauma and non-surgical treatment. We established questionnaire sets for each anatomical region. Every hospitalized patient is screened for inclusion criteria to get the baseline PROMs. Follow-up PROMs are collected at 3-months and 12-months in our outpatient clinic. Results In five months of collecting PROMs, we have evaluated 599 patients, 521 fulfilling the inclusion criteria. 329 (63%) questionnaire sets were completed. The mean time for answering the questions was 11-20 minutes. The input rate of 63% for PROMs accounts for the start of the process, with 22 (4%) patients being dismissed before answering the questionnaires. 93 (18%) patients denied participation. 52 (10%) patients were not able to participate (dementia, delirium). Other causes for missing data were language barriers (n = 28; 5%), medical reasons like polytraumatized patients (n = 4; 0.8%), and deceased patients (n = 15; 2.9%). Conclusion Most Orthopaedic Trauma centers publish data about PROMs from surgically treated patients. Starting in the first quarter of 2021, we will include non-surgically treated patients. We have optimized the process of including patients. Our aim is a response rate of more than 80% within this year to get representing data.


2019 ◽  
Vol 41 (01) ◽  
pp. 071-082
Author(s):  
Elizabeth Hoover ◽  
Alexandra McFee ◽  
Gayle DeDe

AbstractAn estimated 390,000 to 520,000 individuals with severe aphasia (IWSA) currently live in the United States. IWSA experience profound social isolation, which is associated with a wide range of negative health outcomes, including mortality. Treatments for severe aphasia frequently focus on compensatory communication approaches or a discrete communication act rather than on participation-based treatment. The purpose of this study was to determine whether IWSA demonstrated improved performance on standardized language measures, patient-reported outcome measures, and connected speech samples as a result of client-centered conversation group treatment. Results of assessments conducted at pretreatment, posttreatment, and maintenance intervals were variable across participants. All participants demonstrated improvement in at least one of the outcome measures considered. Importantly, none of these measures fully captured how IWSA were able to convey their thoughts in supported conversation. The results lend support for the use of conversation treatment for, and for further study in, this subpopulation of individuals with aphasia.


2021 ◽  
Vol 5 (S2) ◽  
Author(s):  
Fatima Al Sayah ◽  
Xuejing Jin ◽  
Jeffrey A. Johnson

AbstractMany healthcare systems around the world have been increasingly using patient-reported outcome measures (PROMs) in routine outcome measurement to enhance patient-centered care and incorporate the patient’s perspective in health system performance evaluation. One of the key steps in using PROMs in health systems is selecting the appropriate measure(s) to serve the purpose and context of measurement. However, the availability of many PROMs makes this choice rather challenging. Our aim was to provide an integrated approach for PROM(s) selection for use by end-users in health systems.The proposed approach was based on relevant literature and existing guidebooks that addressed PROMs selection in various areas and for various purposes, as well as on our experience working with many health system users of PROMs in Canada. The proposed approach includes the following steps: (1) Establish PROMs selection committee; (2) Identify the focus, scope, and type of PROM measurement; (3) Identify potential PROM(s); (4) Review practical considerations for each of the identified PROMs; (5) Review measurement properties of shortlisted PROMs; (6) Review patient acceptance of shortlisted PROMs; (7) Recommend a PROM(s); and (8) Pilot the selected PROM(s). The selection of appropriate PROMs is one step in the successful implementation of PROMs within health systems, albeit, an essential step. We provide guidance for the selection of PROMs to satisfy all potential usages at the micro (patient-clinician), meso (organization), and macro (system) levels within the health system. Selecting PROMs that satisfy all these purposes is essential to ensure continuity and standardization of measurement over time. This is an iterative process and users should consider all the available information from all presented steps in selecting PROMs. Each of these considerations has a different weight in diverse clinical contexts and settings with various types of patients and resources.


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