scholarly journals The Purpose of Patient-Reported Outcome (PRO) Post Its Digitalization and Integration into Clinical Practice: An Interdisciplinary Redefinition Resembling PROs Theoretical and Practical Evolvement

2020 ◽  
Vol 10 (21) ◽  
pp. 7507
Author(s):  
Jeppe Eriksen ◽  
Ann Bygholm ◽  
Pernille Bertelsen
Keyword(s):  
Clinical Practice ◽  
Drug Testing ◽  
Population Data ◽  
Well Being ◽  
Patient Reported Outcome ◽  
Health Condition ◽  
Physical And Mental Health ◽  
Patient Centered ◽  
Validated Questionnaire ◽  
Patient Reported

Patient-reported outcomes (PROs) digitalization and integration into clinical practice has widened its purpose, which makes it relevant to reconceptualize PRO accordingly. Therefore, this study aims to describe and critically discuss the purposes of PRO and to suggest an interdisciplinary definition of PRO aligned with current applications. The findings in this study are based on a formerly conducted scoping review on PRO and patient participation; hence, a sub-study focusing on the purpose of PRO. The purposes of PRO pertain to research and drug testing; quality and economy; patient-centered care; politicization and democratization; and organization and culture. The suggested definition describes PRO as a validated questionnaire; developed in collaboration between patients, clinicians, and other pertinent stakeholders; systematically applied; mediated digitally or paper-based; completed directly by the patient, with assistance or by a qualified proxy; composed of generic, disease-specific, condition-specific or preference-based measures; consisting of content pertaining to the patient’s physical and mental health condition, functioning, symptoms, well-being or health-related quality of life (HRQoL); providing objective and/or subjective outcomes, and individual and/or population data. An alternative understanding of PRO is meant to enhance the link between purposes and definitions of PRO, facilitating interdisciplinary stakeholder discussions on PRO, potentially improving future PRO interventions.

Patient Reported Outcome Measures in Neurologic Communication Disorders: An Update

2015 ◽  
Vol 25 (3) ◽  
pp. 114-120 ◽  
Author(s):  
Michael de Riesthal ◽  
Katherine B. Ross
Keyword(s):  
Clinical Practice ◽  
Outcomes Research ◽  
Outcome Measurement ◽  
Communication Disorders ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Centered ◽  
Rehabilitation Outcomes ◽  
Patient Reported ◽  
Centered Care

In her seminal book on outcome measurement in the field of communication disorders, Carol Frattali (1998) set the path for outcomes research and clinical application in the field of speech-language pathology. In particular, she defined the many possible outcomes that can be measured to examine the influence of an intervention and the ways in which these measures can inform public policy. Of these, patient or client centered measures, which index outcome based on the patient's and family's or caregiver's perspective, have received increasing attention in recent research and clinical practice. These measures examine a variety of patient reported outcomes (PRO) associated with health. PRO measures are being used more commonly in clinical practice and as end points in medical and rehabilitation outcomes research. This perspective reflects the shift in medicine and rehabilitation toward patient-centered care. In this article, we will examine the rationale for using PRO measures, the advantages and challenges for using these tools, and current use of PRO measures in neurological communication disorders.

scholarly journals The Relationship Among 3 Generic Patient-Reported Outcome Instruments in Patients With Lower Extremity Health Conditions

2019 ◽  
Vol 54 (5) ◽  
pp. 550-555
Author(s):  
Johanna M. Hoch ◽  
Christina Lorete ◽  
Jamie Legner ◽  
Matthew C. Hoch
Keyword(s):  
Clinical Practice ◽  
Lower Extremity ◽  
Psychometric Properties ◽  
Patient Reported Outcome ◽  
Health Condition ◽  
Physically Active ◽  
Patient Reported ◽  
The Relationship ◽  
Active Patients ◽  
Pro Instruments

Context Generic patient-reported outcome (PRO) instruments are designed to capture health-related quality-of-life outcomes and to determine treatment effectiveness from the patient's perspective. Multiple generic PROs are used in clinical practice, and an investigation of the psychometric properties of these instruments in a high-functioning, physically active population is important for the future use of these instruments. Objective To determine the relationship among 3 generic PROs: the modified Disablement in the Physically Active (mDPA) Scale, the Patient-Reported Outcome Measurement Information System Physical Function (PROMIS-PF), and the Short Form 12 (SF-12) in physically active patients seeking treatment for a lower extremity health condition. Design Cross-sectional study. Setting Athletic training clinical facility, physical therapy clinic. Patients or Other Participants One hundred patients seeking rehabilitation services for a lower extremity health condition. Main Outcome Measure(s) All patients completed a demographic questionnaire and the 3 generic PROs at 1 time point during their rehabilitation: the mDPA-Total, mDPA-physical summary component (mDPA-PSC), mDPA-mental summary component (mDPA-MSC), the PROMIS-PF, and SF-12 mental component summary (SF-MCS) and physical component summary (SF-PCS). Separate Spearman rank (r) correlations were performed to assess the strength of the relationship among PRO instruments. The floor and ceiling effects were also examined. Results A strong relationship was present between the SF-12 PCS and the mDPA-Total (r = −0.65), the mDPA-PSC (r = −0.64), and the PROMIS-PF (r = 0.65). Significant moderate relationships were identified between the mDPA-MSC and the SF-12 PCS (r = −0.43) and MCS (r = −0.53). Weak relationships were noted between the mDPA-Total and SF-12 MCS (r = −0.21) and the SF-12 MCS and mDPA-PSC (r = −0.10) and PROMIS-PF (r = 0.20). Conclusions The PROMIS-PF and mDPA had good convergent and divergent validity. Clinicians treating physically active patients should consider these instruments for use in clinical practice. Future researchers should examine additional psychometric properties of these instruments in physically active patients.

scholarly journals Patient-Reported Outcome Measures in Endometriosis

2021 ◽  
Vol 10 (21) ◽  
pp. 5106
Author(s):  
Alba Nicolas-Boluda ◽  
Anne Oppenheimer ◽  
Jerome Bouaziz ◽  
Arnaud Fauconnier
Keyword(s):  
Quality Of Life ◽  
Clinical Practice ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Digital Tools ◽  
Self Management ◽  
Patient Centered ◽  
Patient Reported

Patient Reported Outcome Measures (PROM) evoke measurements that allow capturing patients’ perspectives on their condition. In endometriosis care, physicians’ understanding of the effect of the disease and the treatment on patients is often poor. The use of PROMs in endometriosis clinical practice can facilitate patient-provider communication and the implementation of patient-centered care, improve patients’ quality of life, as well as provide a tool for patients’ self-management of the disease. Today, PROMs are extensively used in research and clinical trials, however they are barely used in clinical practice. The development of digital tools facilitating capturing PROMs can contribute to their use by physicians in routine endometriosis care. However, all PROMs are not adapted to be used in routine care in the context of endometriosis. The objective of this study was to present a catalogue of available PROMs for routine endometriosis care and evaluate them according to selected criteria. To do so, we explored the different PROMs currently in the literature. Consequently, 48 PROM were identified as tools used to evaluate various dimensions of the impact of endometriosis on patients. The selected PROMs were evaluated for their potential to be used as a standard in clinical practice in endometriosis. The selected catalogue of PROMs is the starting point for the integration of digital tools to capture PROMs and the development of patient-centered dashboards to be used by patients and clinicians in endometriosis care and self-management to improve care processes, patient satisfaction, quality of life, and outcomes.

Patient-Reported Outcome Measures in Colorectal Surgery: Construction of Core Measures Using Open-Source Research Method

2021 ◽  
pp. 155335062199887
Author(s):  
Alaa El-Hussuna ◽  
Ines Rubio-Perez ◽  
Monica Millan ◽  
Gianluca Pellino ◽  
Ionut Negoi ◽  
...  
Keyword(s):  
Colorectal Surgery ◽  
Outcome Measures ◽  
Short Form ◽  
Wide Spectrum ◽  
Core Outcome Set ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Eortc Qlq

Purpose. The primary aim of the study was to review the existing literature about patient-reported outcome measures (PROMs) in colorectal cancer and IBD. The secondary aim was to present a road map to develop a core outcome set via opinion gathering using social media. Method. This study is the first step of a three-step project aimed at constructing simple, applicable PROMs in colorectal surgery. This article was written in a collaborative manner with authors invited both through Twitter via the #OpenSourceResearch hashtag. The 5 most used PROMs were presented and discussed as slides/images on Twitter. Inputs from a wide spectrum of participants including researchers, surgeons, physicians, nurses, patients, and patients’ organizations were collected and analyzed. The final draft was emailed to all contributors and 6 patients’ representatives for proofreading and approval. Results. Five PROM sets were identified and discussed: EORTC QLQ-CR29, IBDQ short health questionnaire, EORTC QLQ-C30, ED-Q5-5L, and Short Form-36. There were 315 tweets posted by 50 tweeters with 1458 retweets. Awareness about PROMs was generally limited. The general psycho-physical well-being score (GPP) was suggested and discussed, and then a survey was conducted in which more than 2/3 of voters agreed that GPP covers the most important aspects in PROMs. Conclusion. Despite the limitations of this exploratory study, it offered a new method to conduct clinical research with opportunity to engage patients. The general psycho-physical well-being score suggested as simple, applicable PROMs to be eventually combined procedure-specific, disease-specific, or symptom-specific PROMs if needed.

scholarly journals Patient-Reported Cognitive Outcomes Following Cardiac Surgery: A Descriptive Review

2021 ◽  
Vol 8 ◽  
pp. 237437352198925
Author(s):  
Amanda Robinson ◽  
Edith Pituskin ◽  
Colleen M Norris
Keyword(s):  
Cardiac Surgery ◽  
Cognitive Function ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cognitive Outcomes ◽  
Patient Centered ◽  
Cognitive Changes ◽  
Practice Nurses ◽  
Patient Reported ◽  
Related Quality

A descriptive review was conducted to evaluate the evidence of cognitive patient-reported outcome measures (PROMs) following cardiac surgery. The search of electronic databases resulted in 400 unique manuscripts. Nine studies met the criteria to be part of the final review. Results of the review suggest that there are few validated PROMs that assess cognitive function in the cardiac surgical population. Furthermore, PROMs have not been used to assess overall cognitive function following cardiac surgery within the past decade. However, one domain of cognitive function—memory—was described, with up to half of patients reporting a decline postoperatively. Perceived changes in cognitive function may impact health-related quality of life and a patient’s overall view of the success of their surgery. Early identification of cognitive changes measured with PROMs may encourage earlier intervention and improve patient-centered care. In clinical practice, nurses may be in the best position to administer PROMs preoperatively and postoperatively.

Significance of patient-reported outcomes for occupational resumption and quality of life after cardiac rehabilitation

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
A Salzwedel ◽  
I Koran ◽  
E Langheim ◽  
A Schlitt ◽  
J Nothroff ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Performance ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Funding Source ◽  
Patient Reported ◽  
Returning To Work

Abstract Introduction Comprehensive cardiac rehabilitation (CR) programs based on the bio-psycho-social approach of the international classification of functioning and disease are carried out to achieve improved prognosis, superior health-related quality of life (HRQL) and social integration. We aimed to identify predictors of returning to work (RTW) and HRQL among cardiovascular risk factors and physical performance as well as patient-reported outcome measures (PROMs) modifiable during CR. Methods We designed a prospective observational multi-center study and enrolled 1,586 patients (2017/18) in 12 German rehabilitation centers regardless of their primary allocation diagnoses (e.g. acute myocardial infarction (AMI), coronary artery bypass grafting (CABG), coronary artery disease (CAD), valvular disease). Besides general data (e.g. age, gender, diagnoses), parameters of risk factor management (e.g. smoking, lipid profile, hypertension, lifestyle change motivation), physical performance (e.g. maximum exercise capacity, endurance training load, 6-min walking distance), and PROMs (e.g. depression, heart-focused anxiety, HRQL, subjective well-being, somatic and mental health, pain, general self-efficacy, pension desire as well as self-assessment of occupational prognosis using several questionnaires) were documented at CR admission and discharge. 6 months after discharge, status of RTW and HRQL (SF-12) were captured by a follow-up (FU) survey and analyzed in multivariable regression models with multiple imputation of missing values. Results Out of the study participants, 1,262 patients (54±7 years, 77% men) responded to the follow-up survey and could be analyzed regarding the outcome parameters. Most of them were assigned to CR primarily due to AMI (40%) or CAD without myocardial infarction (18%), followed by heart valve diseases in 12% of patients and CABG (8%). 864 patients (69%) returned to work within the follow-up period. Pension desire, negative self-assessed occupational prognosis, heart-focussed anxiety, major life events, smoking and heart failure were negatively associated with RTW, while higher endurance training load, HRQL and work stress were positively associated (Figure 1). HRQL after 6 months was determined more by PROMs (e.g. pension desire, heart-focused anxiety, physical/mental HRQL in SF-12, physical/mental health in indicators of rehab-status questionnaire (IRES-24), stress, well-being in the World Health Organization well-being index and self-efficacy expectations) than by clinical parameters or physical performance. Conclusions Patient-reported outcome measures predominantly influenced RTW and HRQL in heart-disease patients, whereas patients' pension desire and heart-focussed anxiety had a dominant impact on all investigated endpoints. Therefore, the multi-component CR approach focussing on psychosocial support is crucial for subjective health prognosis and occupational resumption. Figure 1. Predictors of returning to work Funding Acknowledgement Type of funding source: Public grant(s) – National budget only. Main funding source(s): German pension insurance

Quality of Patient-Reported Outcome Studies Utilizing the BREAST-Q: A Systematic Review

2021 ◽  
Author(s):  
Lior Har-Shai ◽  
Sar-El Ofek ◽  
Addy Brandstetter ◽  
Keren H Cohen ◽  
Tamir Shay ◽  
...  
Keyword(s):  
Systematic Review ◽  
Plastic Surgery ◽  
Survey Research ◽  
Breast Surgery ◽  
Sample Size Calculation ◽  
Patient Reported Outcome ◽  
Validated Questionnaire ◽  
Patient Reported ◽  
Current Guidance

Abstract Background Patient-reported outcome (PRO) studies are essential the assessment of surgical procedures in plastic surgery. An accepted and validated questionnaire is the Breast-Q. Objectives This study aims to assess the quality of PRO studies in plastic surgery utilizing the Breast-Q questionnaire. Methods This study included two steps: (1) A systematic review of 23 key-criteria assessing the quality of survey-research in studies utilizing the Breast-Q which were published between 2015-2018; (2) Review of current guidance for survey-research in journals related to Plastic Surgery and Breast Surgery which were included in the systematic review. Results 79 studies were included in the systematic review. Many key-criteria were poorly reported: 51.9% of the studies did not provide a defined response rate and almost 90% did not provide a method for analysis of non-response error. 67.1% lacked a description of the sample's representativeness of the population of interest, and 82.3% did not present a sample size calculation. 11.4% of papers failed to describe the data analyzing methods; in 27.8% the data analysis which was presented could not allow replication of the results. Of the 16 journals in Plastic Surgery and Breast Surgery that their "Instruction to Authors" were reviewed, 15 (93.7%) did not provide any guidance for survey reporting. Conclusions The majority of key criteria are under-reported by authors publishing their survey-research in peer-reviewed journals in the fields of plastic and breast surgery. There is an urgent need for constructing a well-developed reporting guideline for survey-research in plastic surgery and particularly in breast surgery.

scholarly journals Assessing baseline dependency of anchor-based minimal important change (MIC): don’t stratify on the baseline score!

2021 ◽  
Author(s):  
Berend Terluin ◽  
Ewa M. Roos ◽  
Caroline B. Terwee ◽  
Jonas B. Thorlund ◽  
Lina H. Ingelsrud
Keyword(s):  
Real Data ◽  
Patient Reported Outcome ◽  
Health Condition ◽  
Important Change ◽  
Alternative Methods ◽  
Minimal Important Change ◽  
Baseline Score ◽  
Patient Reported ◽  
Before And After ◽  
Parallel Tests

Abstract Purpose The minimal important change (MIC) of a patient-reported outcome measure (PROM) is often suspected to be baseline dependent, typically in the sense that patients who are in a poorer baseline health condition need greater improvement to qualify as minimally important. Testing MIC baseline dependency is commonly performed by creating two or more subgroups, stratified on the baseline PROM score. This study’s purpose was to show that this practice produces biased subgroup MIC estimates resulting in spurious MIC baseline dependency, and to develop alternative methods to evaluate MIC baseline dependency. Methods Datasets with PROM baseline and follow-up scores and transition ratings were simulated with and without MIC baseline dependency. Mean change MICs, ROC-based MICs, predictive MICs, and adjusted MICs were estimated before and after stratification on the baseline score. Three alternative methods were developed and evaluated. The methods were applied in a real data example for illustration. Results Baseline stratification resulted in biased subgroup MIC estimates and the false impression of MIC baseline dependency, due to redistribution of measurement error. Two of the alternative methods require a second baseline measurement with the same PROM or another correlated PROM. The third method involves the construction of two parallel tests based on splitting the PROM’s item set. Two methods could be applied to the real data. Conclusion MIC baseline dependency should not be tested in subgroups based on stratification on the baseline PROM score. Instead, one or more of the suggested alternative methods should be used.

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