scholarly journals Long-term patient-reported outcomes and patient-reported outcome measures after injury: the National Trauma Research Action Plan (NTRAP) scoping review

2021 ◽  
Vol 90 (5) ◽  
pp. 891-900
Author(s):  
Juan P. Herrera-Escobar ◽  
Samia Y. Osman ◽  
Sophiya Das ◽  
Alexander Toppo ◽  
Claudia P. Orlas ◽  
...  
2020 ◽  
Vol 5 (1) ◽  
pp. e000512
Author(s):  
Juan Pablo Herrera-Escobar ◽  
Manuel A Castillo-Angeles ◽  
Samia Y Osman ◽  
Claudia P Orlas ◽  
Mahin B Janjua ◽  
...  

BackgroundA significant proportion of patients who survive traumatic injury continue to suffer impaired functional status and increased mortality long after discharge. However, despite the need to improve long-term outcomes, trauma registries in the USA do not collect data on outcomes or care processes after discharge. One of the main barriers is the lack of consensus regarding the optimal outcome metrics.ObjectivesTo describe the methodology of a scoping review evaluating current evidence on the available measures for tracking functional and patient-reported outcomes after injury. The aim of the review was to identify and summarize measures that are being used to track long-term functional recovery and patient-reported outcomes among adults after injury.MethodsA systematic search of PubMed and Embase will be performed using the search terms for the population (adult trauma patients), type of outcomes (long-term physical, mental, cognitive, and quality of life), and measures available to track them. Studies identified will be reviewed and assessed for relevance by at least two reviewers. Data will be extracted and summarized using descriptive statistics and a narrative synthesis of the results. This protocol is being reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines.DisseminationThis scoping review will provide information regarding the currently available metrics for tracking functional and patient-reported outcomes after injury. The review will be presented to a multi-disciplinary stakeholder group that will evaluate these outcome metrics using an online Delphi approach to achieve consensus as part of the development of the National Trauma Research Action Plan (NTRAP). The results of this review will be presented at relevant national surgical conferences and published in peer-reviewed scientific journals.


2021 ◽  
pp. bmjsrh-2020-200954
Author(s):  
Chelsey Porter Erlank ◽  
Jonathan Lord ◽  
Kathryn Church

IntroductionThe English government approved both stages of early medical abortion (EMA), using mifepristone and misoprostol under 10 weeks’ gestation, for at-home use on 30 March 2020. MSI Reproductive Choices UK (MSUK), one of the largest providers of abortion services in England, launched a no-test telemedicine EMA pathway on 6 April 2020. The objectives of this study were to report key patient-reported outcome measures and to assess whether our sample was representative of the whole population receiving no-test telemedicine EMA.MethodsA sample of all MSUK’s telemedicine EMA patients between April and August 2020 were invited to opt in to a follow-up call to answer clinical and satisfaction questions. A total of 1243 (13.7% of all telemedicine EMAs) were successfully followed-up, on average within 5 days post-procedure.ResultsPatients reported high confidence in telemedicine EMA and high satisfaction with the convenience, privacy and ease of managing their abortion at home. The sample responding were broadly equivalent to the whole population receiving telemedicine. No patient reported that they were unable to consult privately. The majority (1035, 83%) of patients reported preferring the telemedicine pathway, with 824 (66%) indicating that they would choose telemedicine again if COVID-19 were no longer an issue.ConclusionsTelemedicine EMA is a valued, private, convenient and more accessible option that is highly acceptable for patients seeking an abortion, especially those for whom in-clinic visits are logistically or emotionally challenging. Evidence that this pathway would be a first choice again in future for most patients supports the case to make telemedicine EMA permanent.


2021 ◽  
pp. 014662162110131
Author(s):  
S. W. Choi ◽  
S. Lim ◽  
B. D. Schalet ◽  
A. J. Kaat ◽  
D. Cella

A common problem when using a variety of patient-reported outcomes (PROs) for diverse populations and subgroups is establishing a harmonized scale for the incommensurate outcomes. The lack of comparability in metrics (e.g., raw summed scores vs. scaled scores) among different PROs poses practical challenges in studies comparing effects across studies and samples. Linking has long been used for practical benefit in educational testing. Applying various linking techniques to PRO data has a relatively short history; however, in recent years, there has been a surge of published studies on linking PROs and other health outcomes, owing in part to concerted efforts such as the Patient-Reported Outcomes Measurement Information System (PROMIS®) project and the PRO Rosetta Stone (PROsetta Stone®) project ( www.prosettastone.org ). Many R packages have been developed for linking in educational settings; however, they are not tailored for linking PROs where harmonization of data across clinical studies or settings serves as the main objective. We created the PROsetta package to fill this gap and disseminate a protocol that has been established as a standard practice for linking PROs.


2022 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Deborah M. Stein ◽  
Maxwell A. Braverman ◽  
Jimmy Phuong ◽  
Edward Shipper ◽  
Michelle A. Price ◽  
...  

2014 ◽  
Vol 16 (2) ◽  
pp. 239-254 ◽  

The purpose of the article was to provide an overview of patient-reported outcomes (PROs) and related measures that have been examined in the context of obsessive-compulsive disorder (OCD). The current review focused on patient-reported outcome measures (PROMs) that evaluated three broad outcome domains: functioning, health-related quality of life (HRQoL), and OCD-related symptoms. The present review ultimately included a total of 155 unique articles and 22 PROMs. An examination of the PROs revealed that OCD patients tend to suffer from significant functional disability, and report lower HRQoL than controls. OCD patients report greater symptom severity than patients with other mental disorders and evidence indicates that PROMs are sensitive to change and may be even better than clinician-rated measures at predicting treatment outcomes. Nonetheless, it should be noted that the measures reviewed lacked patient input in their development. Future research on PROMs must involve patient perspectives and include rigorous psychometric evaluation of these measures.


2019 ◽  
Vol 4 (1) ◽  
pp. 8-15 ◽  
Author(s):  
Kathryn Yorkston ◽  
Carolyn Baylor

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.


2020 ◽  
pp. 1-11
Author(s):  
James L. Farnsworth ◽  
Todd Evans ◽  
Helen Binkley ◽  
Minsoo Kang

Context: Previous research suggests that several knee-specific patient-reported outcome measures have poor measurement properties. The patient-reported outcomes knee assessment tool (PROKAT) was created to improve assessment of knee-specific function. Examination of the measurement properties of this new measure is critical to determine its clinical value. Objective: Examine the measurement properties of the PROKAT. Design: Cross-sectional study. Setting: Clinical athletic training setting. Patients or Other Participants: The pilot study included 32 student-athletes (mean age = 20.78 [1.01], males = 56.30%). The full study included 203 student-athletes (mean age = 21.46 [4.64], males = 54.70%) from 3 separate institutions. The participants were recruited for both the pilot and full study using face-to-face and electronic (eg, email and social media sites) communications. Intervention(s): Evaluation of the measurement properties of the PROKAT occurred using the Rasch partial-credit model. Main Outcome Measures: Infit and outfit statistics, item step difficulties, person ability parameters, category function, item and test information functions, and Cronbach alpha. An independent samples t test was used to evaluate the differences in injured and noninjured athletes’ scores. Results: The Rasch partial-credit model analysis of pilot test items and qualitative participant feedback were used to modify the initial PROKAT. Evaluation of the revised PROKAT (32 items) indicated 27 items had acceptable model–data fit. The injured athletes scored significantly worse than the noninjured athletes (t188 = 12.89; P < .01). The ceiling effects for the PROKAT were minimal (3.9%). Conclusions: A major advantage of this study was the use of the Rasch measurement and the targeted population. Compared with alternative knee-specific patient-reported outcome measures (eg, Knee Injury Osteoarthritis Outcome Score, International Knee Documentation Committee Subjective Knee Form), the PROKAT has low ceiling effects in athletic populations. In addition, evidence suggests the measure may be capable of distinguishing between injured and noninjured athletes.


10.2196/19685 ◽  
2020 ◽  
Vol 22 (10) ◽  
pp. e19685
Author(s):  
Afaf Girgis ◽  
Ivana Durcinoska ◽  
Anthony Arnold ◽  
Joseph Descallar ◽  
Nasreen Kaadan ◽  
...  

Background Despite the acceptability and efficacy of e–patient-reported outcome (ePRO) systems, implementation in routine clinical care remains challenging. Objective This pragmatic trial implemented the PROMPT-Care (Patient Reported Outcome Measures for Personalized Treatment and Care) web-based system into existing clinical workflows and evaluated its effectiveness among a diverse population of patients with cancer. Methods Adult patients with solid tumors receiving active treatment or follow-up care in four cancer centers were enrolled. The PROMPT-Care intervention supported patient management through (1) monthly off-site electronic PRO physical symptom and psychosocial well-being assessments, (2) automated electronic clinical alerts notifying the care team of unresolved clinical issues following two consecutive assessments, and (3) tailored online patient self-management resources. Propensity score matching was used to match controls with intervention patients in a 4:1 ratio for patient age, sex, and treatment status. The primary outcome was a reduction in emergency department presentations. Secondary outcomes were time spent on chemotherapy and the number of allied health service referrals. Results From April 2016 to October 2018, 328 patients from four public hospitals received the intervention. Matched controls (n=1312) comprised the general population of patients with cancer, seen at the participating hospitals during the study period. Emergency department visits were significantly reduced by 33% (P=.02) among patients receiving the intervention compared with patients in the matched controls. No significant associations were found in allied health referrals or time to end of chemotherapy. At baseline, the most common patient reported outcomes (above-threshold) were fatigue (39%), tiredness (38.4%), worry (32.9%), general wellbeing (32.9%), and sleep (24.1%), aligning with the most frequently accessed self-management domain pages of physical well-being (36%) and emotional well-being (23%). The majority of clinical feedback reports were reviewed by nursing staff (729/893, 82%), largely in response to the automated clinical alerts (n=877). Conclusions Algorithm-supported web-based systems utilizing patient reported outcomes in clinical practice reduced emergency department presentations among a diverse population of patients with cancer. This study also highlighted the importance of (1) automated triggers for reviewing above-threshold results in patient reports, rather than passive manual review of patient records; (2) the instrumental role nurses play in managing alerts; and (3) providing patients with resources to support guided self-management, where appropriate. Together, these factors will inform the integration of web-based PRO systems into future models of routine cancer care. Trial Registration Australian New Zealand Clinical Trials Registry ACTRN12616000615482; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370633 International Registered Report Identifier (IRRID) RR2-10.1186/s12885-018-4729-3


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