scholarly journals LO08: PROM-ED: the development and testing of a patient-reported outcome measure for use with emergency department patients who are discharged home

CJEM ◽  
2018 ◽  
Vol 20 (S1) ◽  
pp. S9-S9
Author(s):  
S. Vaillancourt ◽  
J. Cullen ◽  
D. Linton ◽  
A. Copti Fahmy ◽  
K. Dainty ◽  
...  
Keyword(s):  
Emergency Department ◽  
Phase 1 ◽  
Patient Reported Outcome ◽  
Cognitive Debriefing ◽  
Post Discharge ◽  
Item Reduction ◽  
Outcome Information ◽  
Patient Reported ◽  
Long Form ◽  
Final Item

Introduction: Patient-reported outcome measures (PROM) are questionnaires that can be used to elicit care outcome information from patients. We sought to develop and validate the first PROM for adult patients without a primary mental health or addictions presentation receiving emergency department (ED) care and who were not hospitalized. Methods: PROM development used a multi-phase process based on national and international guidance (FDA, NQF, ISPOR). Phase 1: ED outcome conceptual framework qualitative interviews with ED patients post-discharge informed four core domains (previously published). Phase 2: Item generation scoping review of the literature and existing instruments identified candidate questions relevant for each domain for inclusion in tool. Phase 3: Cognitive debriefing existing and newly written questions were tested with ED patients post-discharge for comprehension and wording preference. Phase 4: Field and validity testing revised tool pilot tested on a national online survey panel and then again at 2 weeks (test-retest). Phase 5: Final item reduction using a Delphi process involving ED clinicians, researchers, patients and system administrators. Phase 6: Validation - psychometric testing of PROM-ED 1.0. Results: Four core outcome domains were defined in Phase 1: (1) understanding; (2) symptom relief; (3) reassurance and (4) having a plan. The domains informed a review of existing relevant questionnaires and instruments and the writing of additional questions creating an initial long-form questionnaire. Eight patients participated in cognitive debriefing of the long-form questionnaire. Expert clinicians, researchers and patient partners provided input on item refinement and reduction. Four hundred forty-four patients completed a second version of the long-form questionnaire (add in retest numbers) which informed the final item reduction process by a modified Delphi method involving 21 diverse contributors. The questionnaire was validated and underwent final revisions to create the 21 questions that constitute PROM-ED 1.0. Conclusion: Using accepted PROM instrument development methodology, we developed the first outcome questionnaire for use with adult ED patients who are not hospitalized. This questionnaire can be used to systematically gather patient-reported outcome information that could support and inform improvement work in ED care.

scholarly journals The Functional Arm Scale for Throwers (FAST)—Part I: The Design and Development of an Upper Extremity Region-Specific and Population-Specific Patient-Reported Outcome Scale for Throwing Athletes

2017 ◽  
Vol 5 (3) ◽  
pp. 232596711769845 ◽  
Author(s):  
Eric L. Sauers ◽  
R. Curtis Bay ◽  
Alison R. Snyder Valier ◽  
Traci Ellery ◽  
Kellie C. Huxel Bliven
Keyword(s):  
Construct Validity ◽  
Patient Reported Outcome ◽  
Stage I ◽  
Stage Ii ◽  
Specific Patient ◽  
Item Reduction ◽  
Patient Reported ◽  
Final Item ◽  
Multiple Domains ◽  
Beta Version

Background: Upper extremity (UE) region-specific, patient-reported outcome (PRO) scales assess injuries to the UE but do not account for the demands of overhead throwing athletes or measure patient-oriented domains of health-related quality of life (HRQOL). Purpose: To develop the Functional Arm Scale for Throwers (FAST), a UE region-specific and population-specific PRO scale that assesses multiple domains of disablement in throwing athletes with UE injuries. In stage I, a beta version of the scale was developed for subsequent factor identification, final item reduction, and construct validity analysis during stage II. Study Design: Descriptive laboratory study. Methods: Three-stage scale development was utilized: Stage I (item generation and initial item reduction) and stage II (factor analysis, final item reduction, and construct validity) are reported herein, and stage III (establishment of measurement properties [reliability and validity]) will be reported in a companion paper. In stage I, a beta version was developed, incorporating National Center for Medical Rehabilitation Research disablement domains and ensuring a blend of sport-related and non–sport-related items. An expert panel and focus group assessed importance and interpretability of each item. During stage II, the FAST was reduced, preserving variance characteristics and factor structure of the beta version and construct validity of the final FAST scale. Results: During stage I, a 54-item beta version and a separate 9-item pitcher module were developed. During stage II, a 22-item FAST and 9-item pitcher module were finalized. The factor solution for FAST scale items included pain (n = 6), throwing (n = 10), activities of daily living (n = 5), psychological impact (n = 4), and advancement (n = 3). The 6-item pain subscale crossed factors. The remaining subscales and pitcher module are distinctive, correlated, and internally consistent and may be interpreted individually or combined. Conclusion: This article describes the development of the FAST, which assesses clinical outcomes and HRQOL of throwing athletes after UE injury. The FAST encompasses multiple domains of disability and demonstrates excellent construct validity. Clinical Relevance: The FAST provides a single UE region-specific and population-specific PRO scale for high-demand throwers to facilitate measurement of impact of UE injuries on HRQOL and clinical outcomes while quantifying recovery for comparative effectiveness studies.

scholarly journals Web-Based Patient-Reported Outcome Measures for Personalized Treatment and Care (PROMPT-Care): Multicenter Pragmatic Nonrandomized Trial

10.2196/19685 ◽  
2020 ◽  
Vol 22 (10) ◽  
pp. e19685
Author(s):  
Afaf Girgis ◽  
Ivana Durcinoska ◽  
Anthony Arnold ◽  
Joseph Descallar ◽  
Nasreen Kaadan ◽  
...  
Keyword(s):  
Emergency Department ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Self Management ◽  
Diverse Population ◽  
Web Based ◽  
Patients With Cancer ◽  
Patient Reported

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

scholarly journals Patient-Reported Outcomes Improves the Prediction of In-patient and Emergency Department Readmission Risks in Coronary Artery Disease

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Danielle Southern ◽  
Colleen Norris ◽  
Hude Quan ◽  
Maria Santana ◽  
Matthew James ◽  
...  
Keyword(s):  
Emergency Department ◽  
Risk Prediction ◽  
Prediction Models ◽  
Policy Decision ◽  
Patient Reported Outcome Measures ◽  
Baseline Survey ◽  
Post Discharge ◽  
Risk Prediction Models ◽  
Patient Reported ◽  
Artery Disease

IntroductionCoronary Artery Disease (CAD) patients are known to report higher healthcare resource use, such as inpatient [IP] and emergency department [ED] readmissions, than the general population. We investigate if the patient reported outcome measures (PROMs) improve the accuracy of readmissions risk prediction models in CAD. Objectives and ApproachPatients enrolled in the Alberta Provincial Project for Outcomes Assessment in Coronary Heart Disease (APPROACH) registry between 1995 and 2014 who received catheterization (CATH) and completed baseline PROMs were linked to discharge abstract data and national ambulatory data. Logistic regression (LR) was used to develop 30-day and 1-year readmissions risk prediction models adjusting for patients’ demographic, clinical, and self-reported characteristics. PROM was measured using the 19-item Seattle Angina Questionnaire (SAQ). The discriminatory performance of each prediction model was assessed using the Harrel’s c-statistic for LR. ResultsOf the 13,264 patients who completed baseline SAQ, 59 (0.3%) had IP readmissions or ED visits within 30 days, and up to 356 (1.9%) within 1 year of baseline survey. The C-statistics for one-year readmissions risk prediction models that only adjusted for demographic and clinical variables only ranged between 56.4% and 61.2%. The prognostic improvement in the discrimination of these models ranged between 2% to 10% when patient-reported SAQ was included as predictor. The addition of SAQ improves the model discrimination in all types of admission. Conclusion/ImplicationsThe addition of PROMs improves the moderate accuracy of readmissions risk prediction models. These findings highlight the need for routine collection of PROMs in clinical settings and their potential use for aiding clinical and policy decision-making and post-discharge outcomes monitoring in the management of cardiovascular diseases.

scholarly journals Development of a conceptual model and patient-reported outcome measures for assessing symptoms and functioning in patients with heart failure

2020 ◽  
Vol 29 (10) ◽  
pp. 2835-2848
Author(s):  
Olga Moshkovich ◽  
Katy Benjamin ◽  
Katie Hall ◽  
Ryan Murphy ◽  
Robyn von Maltzahn ◽  
...  
Keyword(s):  
Heart Failure ◽  
Literature Review ◽  
Conceptual Model ◽  
Phase 1 ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cognitive Testing ◽  
Expert Interviews ◽  
Cognitive Changes ◽  
Patient Reported

Abstract Purpose Heart failure (HF) is a common condition that places considerable burden on patients. We aimed to develop a patient-reported outcome (PRO) measure to assess the symptoms and impacts of HF. Methods Phase 1: a targeted literature review, expert interviews, and concept elicitation (CE) interviews with patients with HF (n = 26) were used to develop a conceptual model of the core symptoms and impacts of HF. To capture these concepts, three new fit-for-purpose PRO questionnaires were constructed in accordance with US Food and Drug Administration PRO guidance. Phase 2: three ‘waves’ of cognitive interviews were conducted with patients with HF (n = 28) to validate and refine the questionnaires. Results Three key symptoms—shortness of breath, oedema, and fatigue—were identified across the literature review, expert interviews and CE interviews. Several additional symptoms, cognitive changes and impacts of HF were reported in the CE interviews and included in the conceptual model. A 10-item symptom questionnaire (Heart Failure-Daily Symptom Diary) was constructed; cognitive testing showed that the final PRO measure was easy to understand/complete and relevant to patients with HF, confirming content validity. Two HF impact questionnaires were developed (Assessing Dyspnoea’s Impact on Mobility and Sleep and Heart Failure-Functional Status Assessment), but required refinement to ensure patient understanding. Conclusions Patient input contributed to the development of a PRO instrument for assessing physical and cognitive symptoms important to patients with HF using novel measurement strategies. Inclusion of daily metrics offers differentiation from other qualified instruments and may provide clinical insight for improving lifestyles. Additionally, two draft PRO measures may, after further validation, be useful to assess the impacts of HF.

scholarly journals Patient‐Reported Outcome Information Collected from Lupus Patients Using a Mobile Application: Compliance and Validation

2021 ◽  
Author(s):  
Kristy Bell ◽  
Claire Dykas ◽  
Bridget Muckian ◽  
Brooke Williams ◽  
Hope Rainey ◽  
...  
Keyword(s):  
Mobile Application ◽  
Patient Reported Outcome ◽  
Outcome Information ◽  
Patient Reported

Patients’ Experience of Myositis and Further Validation of a Myositis-specific Patient Reported Outcome Measure — Establishing Core Domains and Expanding Patient Input on Clinical Assessment in Myositis. Report from OMERACT 12

2015 ◽  
Vol 42 (12) ◽  
pp. 2492-2495 ◽  
Author(s):  
Malin Regardt ◽  
Pari Basharat ◽  
Lisa Christopher-Stine ◽  
Catherine Sarver ◽  
Anita Björn ◽  
...  
Keyword(s):  
Focus Groups ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cognitive Debriefing ◽  
Specific Patient ◽  
Patient Reported ◽  
Group Interviews ◽  
Patients Experience ◽  
Continue Work

Objective.The Outcome Measures in Rheumatology (OMERACT) myositis working group was established to examine patient-reported outcomes (PRO) as well as to validate patient-reported outcome measures (PROM) in myositis.Methods.Qualitative studies using focus group interviews and cognitive debriefing of the myositis-specific Myositis Activities Profile (MAP) were used to explore the experience of adults living with polymyositis (PM) and dermatomyositis (DM).Results.Preliminary results underscore the importance of patient input in the development of PROM to ensure content validity. Results from multicenter focus groups indicate the range of symptoms experienced including pain, fatigue, and impaired cognitive function, which are not currently assessed in myositis. Preliminary cognitive debriefing of the MAP indicated that while content was deemed relevant and important, several activities were not included; and that questionnaire construction and wording may benefit from revision. A research agenda was developed to continue work toward optimizing PRO assessment in myositis with 2 work streams. The first would continue to conduct and analyze focus groups until saturation in the thematic analysis was achieved to develop a framework that encompassed the patient-relevant aspects of myositis. The second would continue cognitive debriefing of the MAP to identify potential areas for revision. There was agreement that further work would be needed for inclusion body myositis and juvenile dermatomyositis, and that the inclusion of additional contributors such as caregivers and individuals from the pharmaceutical/regulatory spheres would be desirable.Conclusions.The currently used PROM do not assess symptoms or the effects of disease that are most important to patients; this emphasizes the necessity of patient involvement. Our work provides concrete examples for PRO identification.

Assessing Patient-reported Quality of Life Outcomes in Vulva Cancer Patients: A Systematic Literature Review

2018 ◽  
Vol 28 (4) ◽  
pp. 808-817 ◽  
Author(s):  
Ligita Paskeviciute Froeding ◽  
Elfriede Greimel ◽  
Anne Lanceley ◽  
Anne Oberguggenberger ◽  
Claudia Schmalz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Negative Impact ◽  
Phase 1 ◽  
Reporting Quality ◽  
Bowel Function ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Vulva Cancer

ObjectivesVulva cancer (VC) treatment carries a high risk of severe late effects that may have a negative impact on quality of life (QoL). Patient-reported outcome measures (PROMs) are increasingly used when evaluating disease- and treatment-specific effects. However, the adequacy of measures used to assess sequelae and QoL in VC remains unclear. The aims of the present study were to evaluate disease- and treatment-related effects as measured by PROMs in VC patients and to identify available VC-specific PROMs.Methods/MaterialsA systematic literature search from 1990 to 2016 was performed. The inclusion criterion was report of disease- and treatment-related effects in VC patients using PROMs in the assessment. Methodological and reporting quality was in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. This systematic review was performed as part of phase 1 of the development of a European Organisation for Research and Treatment of Cancer QoL questionnaire for VC patients.ResultsThe search revealed 2299 relevant hits, with 11 articles extracted including a total of 535 women with VC; no randomized controlled trials were identified. The selected studies exhibited great heterogeneity in terms of PROMs use. Twenty-one different instruments assessed QoL. Most of the questionnaires were generic. Different issues (sexuality, lymphedema, body image, urinary and bowel function, vulva-specific symptoms) were reported as potentially important, but the results were not systematically collected. Only one VC-specific questionnaire was identified but did not allow for assessment and reporting on a scale level.ConclusionsVulva cancer treatment is associated with considerable morbidity deteriorating QoL. To date, there is no validated PROM available that provides adequate coverage of VC-related issues. The study confirms the need for a VC-specific QoL instrument with sensitive scales that allows for broad cross-cultural application for use in clinical trials.

scholarly journals Patient-reported outcome measures in the recovery of adults hospitalised with community-acquired pneumonia: a systematic review

2019 ◽  
Vol 53 (3) ◽  
pp. 1802165 ◽  
Author(s):  
Harry J. Pick ◽  
Charlotte E. Bolton ◽  
Wei Shen Lim ◽  
Tricia M. McKeever
Keyword(s):  
Systematic Review ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Community Acquired Pneumonia ◽  
Assessment Tools ◽  
Post Discharge ◽  
Wide Range ◽  
Patient Reported ◽  
Prisma Statement

Symptomatic and functional recovery are important patient-reported outcome measures (PROMs) in community-acquired pneumonia (CAP) that are increasingly used as trial end-points. This systematic review summarises the literature on PROMs in CAP.Comprehensive searches in accordance with the PRISMA statement were conducted to March 2017. Eligible studies included adults discharged from hospital following confirmed CAP and reporting PROMs.15 studies (n=5644 patients) were included; most were of moderate quality. Studies used a wide range of PROMs and assessment tools. At 4–6 weeks post-discharge, the commonest symptom reported was fatigue (45.0–72.6% of patients, three studies), followed by cough (35.3–69.7%) and dyspnoea (34.2–67.1%); corresponding values from studies restricted by age <65 years (two studies) were lower: fatigue 12.1–25.7%, cough 19.9–31.9% and dyspnoea 16.8–27.5%. Functional impairment 4 weeks post-discharge was reported in 18–51% of patients (two studies), while median time to return to normal activities was between 15 and 28 days (three studies).Substantial morbidity is reported by patients up to 6 weeks post-discharge. There is weak methodological consistency across existing studies. A core set of PROMs for use in future studies is suggested.

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