A View on Patient-Reported Outcome Measures

Author(s):  
François Duhoux ◽  
Rishi Hazarika

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.

2021 ◽  
Vol 264 ◽  
pp. 394-401
Author(s):  
Mary Kate Luddy ◽  
Rachel Vetter ◽  
Jessica Shank ◽  
Whitney Goldner ◽  
Anery Patel ◽  
...  

Author(s):  
Chandra Thomas ◽  
Amanda Halpin

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.


JHEP Reports ◽  
2020 ◽  
Vol 2 (3) ◽  
pp. 100099 ◽  
Author(s):  
Lorraine McSweeney ◽  
Matthew Breckons ◽  
Gulnar Fattakhova ◽  
Yemi Oluboyede ◽  
Luke Vale ◽  
...  

2021 ◽  
Vol 5 (S2) ◽  
Author(s):  
Sara N. Davison ◽  
Scott Klarenbach ◽  
Braden Manns ◽  
Kara Schnick-Makaroff ◽  
Robert Buzinski ◽  
...  

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.


Author(s):  
Diego Gómez Herrero ◽  
Rafael Sanjuan-Cerveró ◽  
Pedro Vazquez-Ferreiro ◽  
Francisco Javier Carrera-Hueso ◽  
Marina Sáez-Belló ◽  
...  

Objective: The objective of this study is to carry out a systematic review of the outcome measures reported by the patient that are used to measure the quality of life of patients with Dupuytren´s disease (DD), assessing their relevance and effectiveness. Methods: A systematic literature search was carried out in the PubMed®, Web of Sciencie®, SciELO®, EMBASE®, Google Scholar® and Cochrane® databases. We searched for peer-reviewed articles evaluating health related quality of life (HR-QoL) in patients with DD diagnosed and/or treated until April 1, 2017, for English or Spanish language. The following keywords were used: “Dupuytren´s disease (MeSH)” AND “health related quality of life (MeSH)”. The documents were eligible for inclusion if they described data on the HR-QoL domains in relation to diagnosis or treatment of DD after a revision process by two independent authors. The checklist (STROBE) was used to evaluate the quality of the works. Results: From 352 identified articles were finally selected 26 studies in the systematic review, mostly European. A total of nine outcomes measures specifically reported by the patient were identified: DASH (used in 13 of the 26 selected studies), Quick-DASH (8/26), MHQ (7/26), briefMHQ (1/26), URAM (4/26), POS-HAND/ARM (1/26), SDSS (1/26), DDSP (1/26) and CHFS (1/26) questionnaires. We analyze their quantitative results to evaluate the effectiveness and evaluate the methodological quality of the studies on the measurement properties of the results reported by patients related to health. Conclusion: More work is urgently needed in these areas before we can reach a consensus on which instrument is the best to assess functional deterioration and improvement in patients with DD.


Author(s):  
Agneta A Pagels ◽  
Maria Stendahl ◽  
Marie Evans

AbstractBackgroundAlthough patient-reported outcome measures (PROMs) are gaining increased interest in developing health care quality and are a useful tool in person-centered care, their use in routine care is still limited. The aim of this study is to describe the implementation and initial results of PROMs via the Swedish Renal Registry (SRR) on a national level.MethodsAfter testing and piloting the electronic PROM application, nationwide measures were carried out in 2017 for completing the RAND-36 questionnaire online or by paper in a wide range of chronic kidney disease (CKD) patients (Stages 3–5, dialysis and transplantation) through the SRR. Cross-sectional results during the first year were analyzed by descriptive statistics and stratified by treatment modality.ResultsA total of 1378 patients from 26 of 68 renal units (39%) completed the questionnaire. The response rate for all participating hemodialysis units was 38.9%. The CKD patients had an impaired health profile compared with a Swedish general population, especially regarding physical functions and assessed general health (GH). Transplanted patients had the highest scores, whereas patients on dialysis treatment had the lowest scores. The youngest age group assessed their physical function higher and experienced fewer physical limitations and less bodily pain than the other age groups but assessed their GH and vitality (VT) relatively low. The oldest age group demonstrated the lowest health profile but rated their mental health higher than the other age groups. The older the patient, the smaller the difference compared with persons of the same age in the general population.ConclusionsNationwide, routine collection of PROMs is feasible in Sweden. However, greater emphasis is needed on motivating clinical staff to embrace the tool and its possibilities in executing person-centered care. CKD patients demonstrate impaired health-related quality of life, especially regarding limitations related to physical problems, GH and VT/energy/fatigue.


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