scholarly journals Importance of Patient-Reported Outcome Measures on Clinical Practice in Patients With Kidney Disease

2021 ◽  
Author(s):  
Rebecca Frazier ◽  
John Devin Peipert
2020 ◽  
Vol 5 (2_suppl) ◽  
pp. 48-60
Author(s):  
Lesley Ann Saketkoo ◽  
Mary Beth Scholand ◽  
Matthew R. Lammi ◽  
Anne-Marie Russell

Systemic sclerosis (SSc) is a progressive vasculopathic, fibrosing autoimmune condition, portending significant mortality; wherein interstitial lung disease (ILD) is the leading cause of death. Although lacking a definitive cure, therapeutics for (SSc-ILD) that stave progression exist with further promising primary and adjuvant compounds in development, as well as interventions to reduce symptom burden and increase quality of life. To date, there has been a significant but varied history related to systemic sclerosis–related interstitial lung disease trial design and endpoint designation. This is especially true of endpoints measuring patient-reported perceptions of efficacy and tolerability. This article describes the underpinnings and complexity of the science, methodology, and current state of patient-reported outcome measures used in (SSc-ILD) systemic sclerosis–related interstitial lung disease in clinical practice and trials.


2016 ◽  
Vol 26 (2) ◽  
pp. 245-257 ◽  
Author(s):  
Michelle M. Holmes ◽  
George Lewith ◽  
David Newell ◽  
Jonathan Field ◽  
Felicity L. Bishop

PLoS ONE ◽  
2020 ◽  
Vol 15 (12) ◽  
pp. e0243563
Author(s):  
Alexandra O. Robertson ◽  
Valerija Tadić ◽  
Jugnoo S. Rahi

Background/Objectives Routine use of patient-reported outcome measures (PROMs) to assess quality of health care systems is mandated in many countries and has been implemented successfully in many specialities. Ophthalmology currently lags behind. To support and inform future implementation, we investigated paediatric ophthalmic clinicians’ experience of, and future training needs for, using child-appropriate vision PROMs and their views about the barriers and enablers to future routine implementation in clinical practice. Methods We conducted a pilot study, using an online survey to elicit the experience, attitudes, training needs and perceptions of barriers and enablers to routine PROMs use of ophthalmic health professionals in the Paediatric Ophthalmology Department at Great Ormond Street Hospital, London. A focus-group was undertaken to discuss survey results and preferences regarding presentation of PROM data. Analysis comprised descriptive statistics, presented alongside complementary qualitative data. Results Eighteen clinicians in the department completed the survey. Twenty-seven took part in the focus group. Clinicians had limited experience of using PROMs but high confidence in the potential positive impact on communication with patients, monitoring chronic conditions and clinical decision-making. Clinicians identified operational issues (collection and analysis of data) and impact (interpretation and application of data) as the two key areas for consideration. Training and information requirements before implementation were clearly articulated, alongside the benefits of using digital/electronic data capture ahead of consultations to allow efficiency and automated analysis, and presentation in an appropriate visual format alongside clinical data to ensure meaningful use. Conclusion The findings of this pilot study of ophthalmic clinicians working in a specialist paediatric ophthalmology department, suggest that ophthalmic clinicians recognise the potential benefits of routine PROMs use in clinical practice. Together with existing literature outside ophthalmology relating to overcoming barriers and exploiting enablers to routine implementation, findings may be applicable in planning routine PROM implementation in paediatric ophthalmology.


Cephalalgia ◽  
2021 ◽  
pp. 033310242110345
Author(s):  
Raquel Gil-Gouveia ◽  
António Gouveia Oliveira

Background Several patient-reported outcome measures are available to monitor headache impact, but are those reliable in real-life clinical practice? Methods Two identical patient-reported outcome measures (HALT-90 and MIDAS) were applied simultaneously in each clinical visit to a series of patients treated with monoclonal antibodies for migraine and intra-individual agreement was evaluated using the intraclass correlation coefficients. Results Our sample included 92 patients, 92.4% females, 45 years old on average. Moderate (0.50 to 0.75) and even poor (<0.50) ICC were observed in all but the first item of these patient-reported outcome measures in at least one evaluation. Over time, missing data were more frequent and no learning effect was detected. Discussion We observed intra-personal variation in reliability when answering patient-reported outcome measures, persisting in repeated applications, and a decrease in the motivation to respond, which should alert clinicians for these additional challenges in real-life clinical practice.


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