scholarly journals Physical activity and exercise in peritoneal dialysis: International Society for Peritoneal Dialysis and the Global Renal Exercise Network practice recommendations

2021 ◽  
pp. 089686082110552
Author(s):  
Paul N Bennett ◽  
Clara Bohm ◽  
Oksana Harasemiw ◽  
Leanne Brown ◽  
Iwona Gabrys ◽  
...  
Keyword(s):  
Physical Activity ◽  
Peritoneal Dialysis ◽  
Clinical Practice ◽  
International Society ◽  
Patient Reported Outcome ◽  
Adverse Outcomes ◽  
Abdominal Pressure ◽  
Patient Reported ◽  
Peritoneal Space ◽  
Physical Activity And Exercise

Life participation requiring physical activity and physical function is a key patient-reported outcome for people receiving peritoneal dialysis (PD). Clinician guidance is required from multidisciplinary sources regarding exercise and activity advice to address the specific needs of this group. From August 2020 through to June 2021, the Global Renal Exercise Network and the International Society for Peritoneal Dialysis reviewed the published literature and international clinical experience to develop a set of clinical practice points. A set of questions relevant to physical activity and exercise were developed from the perspective of a person receiving PD and were the basis for the practice point development. The GRADE framework was used to evaluate the quality of evidence and to guide clinical practice points. The review of the literature found sparse quality evidence, and thus the clinical practice points are generally based on the expert consensus of people receiving PD, PD exercise expert clinicians and experienced PD exercise researchers. Clinical practice points address timing of exercise and activity (post-catheter insertion, peritoneal space empty or full), the uptake of specific activities (work, sex, swimming, core exercise), potential adverse outcomes related to activity and exercise (exit site care, perspiration, cardiovascular compromise, fatigue, intra-abdominal pressure), the effect of exercise and activity on conditions of interest (mental health, obesity, frailty, low fitness) and exercise nutrition.

scholarly journals Scope and heterogeneity of outcomes reported in randomized trials in patients receiving peritoneal dialysis

2020 ◽  
Author(s):  
Karine E Manera ◽  
David W Johnson ◽  
Yeoungjee Cho ◽  
Benedicte Sautenet ◽  
Jenny Shen ◽  
...  
Keyword(s):  
Peritoneal Dialysis ◽  
Patient Reported Outcomes ◽  
Randomized Trials ◽  
Primary Outcome ◽  
Median Number ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Inform Decision Making ◽  
Solute Clearance

Abstract Background Randomized trials can provide evidence to inform decision-making but this may be limited if the outcomes of importance to patients and clinicians are omitted or reported inconsistently. We aimed to assess the scope and heterogeneity of outcomes reported in trials in peritoneal dialysis (PD). Methods We searched the Cochrane Kidney and Transplant Specialized Register for randomized trials in PD. We extracted all reported outcome domains and measurements and analyzed their frequency and characteristics. Results From 128 reports of 120 included trials, 80 different outcome domains were reported. Overall, 39 (49%) domains were surrogate, 23 (29%) patient-reported and 18 (22%) clinical. The five most commonly reported domains were PD-related infection [59 (49%) trials], dialysis solute clearance [51 (42%)], kidney function [45 (38%)], protein metabolism [44 (37%)] and inflammatory markers/oxidative stress [42 (35%)]. Quality of life was reported infrequently (4% of trials). Only 14 (12%) trials included a patient-reported outcome as a primary outcome. The median number of outcome measures (defined as a different measurement, aggregation and metric) was 22 (interquartile range 13–37) per trial. PD-related infection was the most frequently reported clinical outcome as well as the most frequently stated primary outcome. A total of 383 different measures for infection were used, with 66 used more than once. Conclusions Trials in PD include important clinical outcomes such as infection, but these are measured and reported inconsistently. Patient-reported outcomes are infrequently reported and nearly half of the domains were surrogate. Standardized outcomes for PD trials are required to improve efficiency and relevance.

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.

The Performance and Association Between Patient-reported and Performance-based Measures of Physical Functioning in Research on Individuals with Arthritis

2015 ◽  
Vol 43 (1) ◽  
pp. 131-137 ◽  
Author(s):  
Laura C. Pinheiro ◽  
Leigh F. Callahan ◽  
Rebecca J. Cleveland ◽  
Lloyd J. Edwards ◽  
Bryce B. Reeve
Keyword(s):  
Physical Activity ◽  
Physical Functioning ◽  
Physical Activity Intervention ◽  
Secondary Data ◽  
Patient Reported Outcome ◽  
Surrogate Endpoints ◽  
Accurate Representation ◽  
Patient Reported ◽  
And Performance ◽  
Community Trial

Objective.To evaluate the association between patient-reported outcome (PRO) and performance-based (PB) measures of physical functioning (PF) among individuals with self-identified arthritis to inform decisions of which to use when evaluating the effectiveness of a physical activity intervention.Methods.Secondary data analysis of a nonrandomized 2-arm pre-post community trial of 462 individuals who self-identified as having arthritis and participated in the Walk with Ease (WWE) intervention. Two PRO and 8 PB assessments were collected at baseline (preintervention) and at 6-week followup. We calculated correlations between PB and PRO measures, assessed how measures identified changes in PF from baseline to followup, and compared PRO and PB measures to arthritis symptoms of pain, stiffness, and fatigue.Results.Strength of correlations between PB and PRO measures varied depending on the PB measure, ranging from 0.21 to 0.54. PRO and PB measures identified PF improvements from baseline to followup, but none showed significant differences between the 2 WWE modalities (instructor-led or self-directed groups). Correlations with arthritis symptoms were stronger for PRO (0.30–0.46) than PB measures (0.03–0.31).Conclusion.PRO measures may provide us with insights into aspects of PF that are not identified by PB measures alone. Use of PRO measures allows patients to communicate their perceptions of PF, which may provide a more accurate representation of overall PF. Our study does not suggest abandoning the use of PB measures to characterize PF in patients with self-identified arthritis, but recommends that PRO measures may serve as complementary or surrogate endpoints for some studies.

A Novel Electronic Application of Patient-reported Outcomes in Multiple Sclerosis – Meeting the Necessary Challenge of Assessing Quality of Life and Outcomes in Daily Clinical Practice

2014 ◽  
Vol 9 (1) ◽  
pp. 49 ◽  
Author(s):  
Simon Exell ◽  
Mark Thristan ◽  
Fernando Dangond ◽  
Kurt Marhardt ◽  
Meaghan St Charles Krohe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinical Practice ◽  
Negative Impact ◽  
Patient Reported Outcome ◽  
Software Application ◽  
Wireless Data Transmission ◽  
Patient Reported ◽  
Auto Injector

Multiple sclerosis (MS) has a substantial negative impact on health-related quality of life. Clinical assessments often do not include standardised, routine assessment of MS impact from the patient perspective, and communication between healthcare practitioners (HCPs) and patients can be lacking. Thus, there is a need for patient-reported outcome (PRO) measures to encourage patient–HCP communication, to help inform HCPs of matters important to patients and to aid both patients and HCPs in managing the disease. MSdialog is a web- and mobile-based software application that works with auto-injector devices and electronic autoinjectors, including the RebiSmart® 2.0 device (a handheld electronic Rebif® auto-injector with wireless data transmission capabilities, CE marked and available worldwide [excluding the US]) to collect and store real-time, point-of-administration adherence, clinician-reported outcomes and PRO data. MSdialog may provide a practical solution to support patient-proactive engagements and self-management, patient-centred care and participatory decision-making in clinical practice.

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