scholarly journals Patient-reported outcome measures in the care of in-centre hemodialysis patients

2021 ◽  
Vol 5 (S2) ◽  
Author(s):  
Sara N. Davison ◽  
Scott Klarenbach ◽  
Braden Manns ◽  
Kara Schnick-Makaroff ◽  
Robert Buzinski ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Outcome Measures ◽  
Symptom Burden ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Clinical Workflow ◽  
Level Of Functioning ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

AbstractKidney failure requiring dialysis is associated with high symptom burden and low health-related quality of life (HRQL). Patient-reported outcome measures (PROMs) are standardized instruments that capture patients’ symptom burden, level of functioning, and HRQL. The routine use of PROMs can be used to monitor aspects of patients’ health that may otherwise be overlooked, inform care planning, and facilitate the introduction of treatments. Incorporating PROMs into clinical practice is an appropriate strategy to engage patients and enhance their role in decisions regarding their care and outcomes. However, the implementation of PROMs measurement and associated interventions can be challenging given the nature of clinical practice in busy hemodialysis units, the variations in organization and clinical workflow across units, as well as regional programs. Implementing PROMs and linking these with actionable treatment aids to alleviate bothersome symptoms and improve patients’ wellbeing is key to improving patients’ health. Other considerations in implementing PROMs within a hemodialysis setting include integration into electronic medical records, purchase and configuration of electronic tools (i.e., tablets), storage and disinfection of such tools, and ongoing IT resources. It is important to train clinicians on the practical elements of using PROMs, however there is also a need to engage clinicians to use PROMs on an ongoing basis. This article describes how PROMs have been implemented at in-centre hemodialysis units in Alberta, Canada, addressing each of these elements.

Assessing Patients’ Unmet Palliative Care Needs With Tools for Assessment

2020 ◽  
pp. 49-57
Author(s):  
Chandra Thomas ◽  
Amanda Halpin
Keyword(s):  
Outcome Measures ◽  
Symptom Burden ◽  
Patient Reported Outcome Measures ◽  
Management Plan ◽  
Patient Reported Outcome ◽  
Care Needs ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

High symptom burden of living with kidney disease negatively impacts patients’ health-related quality of life, making it important to routinely screen for symptoms to identify their unmet needs. Research shows that clinicians are inaccurate at estimating symptoms of their patients; therefore, validated tools called patient-reported outcome measures have been developed to improve screening for and identification of troublesome symptoms patients are experiencing. Routinely incorporating patient-reported outcome measures will likely require some change to many current practices; utilizing a change management plan with appointed champion(s) and a supporting multidisciplinary team can help ensure the success of this practice transformation.

Patient Reported Outcome Measures of Health-Related Quality of Life and Asthenia after Thyroidectomy

2021 ◽  
Vol 264 ◽  
pp. 394-401
Author(s):  
Mary Kate Luddy ◽  
Rachel Vetter ◽  
Jessica Shank ◽  
Whitney Goldner ◽  
Anery Patel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

scholarly journals Patient-reported outcome measures in systemic sclerosis–related interstitial lung disease for clinical practice and clinical trials

2020 ◽  
Vol 5 (2_suppl) ◽  
pp. 48-60
Author(s):  
Lesley Ann Saketkoo ◽  
Mary Beth Scholand ◽  
Matthew R. Lammi ◽  
Anne-Marie Russell
Keyword(s):  
Clinical Practice ◽  
Systemic Sclerosis ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
Outcome Measures ◽  
Symptom Burden ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Science Methodology

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.

Computerized adaptive technology for the assessment of HRQOL of PD and CKD patients

2020 ◽  
pp. 089686082095996
Author(s):  
Fredric O Finkelstein ◽  
Monica Cimini ◽  
Susan H Finkelstein ◽  
Alan S Kliger
Keyword(s):  
Quality Of Life ◽  
Symptom Burden ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Related Quality ◽  
Adaptive Technology ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

This study was designed as a pilot study to see whether electronic patient-reported outcome measures using computer adaptive technology (CAT) could be successfully implemented in clinics caring for chronic kidney disease (CKD) and peritoneal dialysis (PD) patients. The results demonstrate the feasibility of using CAT on an iPad to assess the symptom burden and health-related quality of life of both PD and CKD patients.

A View on Patient-Reported Outcome Measures

2019 ◽  
pp. 46-49
Author(s):  
François Duhoux ◽  
Rishi Hazarika
Keyword(s):  
Health Care ◽  
Health Outcomes ◽  
Outcome Measures ◽  
Health Care Quality ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Care Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Abstract: Patient-reported outcome measures (PROMs) are being implemented more frequently in the clinical setting to monitor health-related quality of life. The breast cancer standard set developed by the International Consortium for Health Outcomes Measurement (ICHOM) aims at reducing health care costs by preventing medical errors and unnecessary treatments, supporting informed decision-making, and improving health care quality by allowing physicians to compare their health outcomes data to other providers. It encompasses survival, cancer control, and disutility of care outcomes in addition to selected case-mix factors, which are to be collected at baseline, and a combination of multiple PROM tools to capture long-term degree of health outcomes. It can be used for both the early and the metastatic settings. Implementing PROMs is both complex and time-consuming. This or a similar process will likely become mandatory in developed nations, where value-based health care is becoming increasingly popular.

scholarly journals Health-related quality of life and patient-reported outcome measures in NASH-related cirrhosis

JHEP Reports ◽  
2020 ◽  
Vol 2 (3) ◽  
pp. 100099 ◽  
Author(s):  
Lorraine McSweeney ◽  
Matthew Breckons ◽  
Gulnar Fattakhova ◽  
Yemi Oluboyede ◽  
Luke Vale ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

PROMsBase: Web-based repository portal for patient-reported outcome measures in orthopaedics

2017 ◽  
Vol 25 (3) ◽  
pp. 867-877 ◽  
Author(s):  
Oren Tirosh ◽  
Phong Tran ◽  
Jesse Renouf ◽  
Nicholas Pergaminelis ◽  
Christa Noelle Purdie ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Routine Practice ◽  
Clinical Workflow ◽  
Web Based ◽  
Post Surgery ◽  
Patient Reported ◽  
Questionnaire Online

Patient-reported outcome measures lead to better communication and decision-making between clinicians and patients. Applying a web-based repository system for data collection was previously suggested, but such system is not available. This article introduces the development and implementation of a new web-based application, PROMsBase, in orthopaedics clinical practice. PROMsBase was developed using a web interface, allows access using both desktop and mobile devices. Between 2013 and 2016, a total of 3192 pre-surgery questionnaires were collected. In total, 238 patients completed their post-surgery questionnaire online from home. PROMsBase was well embedded into routine practice without disrupting clinical workflow and overloading clinicians’ and researchers’ workload. Tablets were not more useful and only 37 per cent of the patients completed the questionnaire online. PROMsBase provided a platform to easily collect and store data in clinical practice. If properly integrated, this could promote better care and communication between providers and patients.

scholarly journals Routinely measuring symptom burden and health-related quality of life in dialysis patients: first results from the Dutch registry of patient-reported outcome measures

2020 ◽  
Author(s):  
Esmee M van der Willik ◽  
Marc H Hemmelder ◽  
Hans A J Bart ◽  
Frans J van Ittersum ◽  
Judith M Hoogendijk-van den Akker ◽  
...  
Keyword(s):  
Symptom Burden ◽  
Response Rates ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Dialysis Patients ◽  
Patient Reported ◽  
Related Quality ◽  
First Results ◽  
Health Related

Abstract Background The use of patient-reported outcome measures (PROMs) is becoming increasingly important in healthcare. However, incorporation of PROMs into routine nephrological care is challenging. This study describes the first experience with PROMs in Dutch routine dialysis care. Methods A pilot study was conducted in dialysis patients in 16 centres. Patients were invited to complete PROMs at baseline and 3 and 6 months. PROMs consisted of the 12-item short-form and Dialysis Symptom Index to assess health-related quality of life (HRQoL) and symptom burden. Response rates, HRQoL and symptom burden scores were analysed. Qualitative research methods were used to gain insight into patients’ views on using PROMs in clinical practice. Results In total, 512 patients (36%) completed 908 PROMs (24%) across three time points. Response rates varied from 6 to 70% among centres. Mean scores for physical and mental HRQoL were 35.6 [standard deviation (SD) 10.2] and 47.7 (SD 10.6), respectively. Patients experienced on average 10.8 (SD 6.1) symptoms with a symptom burden score of 30.7 (SD 22.0). Only 1–3% of the variation in PROM scores can be explained by differences between centres. Patients perceived discussing their HRQoL and symptom scores as insightful and valuable. Individual feedback on results was considered crucial. Conclusions The first results show low average response rates with high variability among centres. Dialysis patients experienced a high symptom burden and poor HRQoL. Using PROMs at the individual patient level is suitable and may improve patient–professional communication and shared decision making. Further research is needed to investigate how the collection and the use of PROMs can be successfully integrated into routine care to improve healthcare quality and outcomes.

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