scholarly journals Glucocorticoid toxicity reduction with Mepolizumab using the glucocorticoid toxicity index

2021 ◽  
pp. 2100160
Author(s):  
P. Jane McDowell ◽  
John H. Stone ◽  
Yuqing Zhang ◽  
Kirsty Honeyford ◽  
Louise Dunn ◽  
...  
Keyword(s):  
Severe Asthma ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Minimally Clinically Important Difference ◽  
Toxicity Index ◽  
Oral Glucocorticoid ◽  
Individual Patient Level ◽  
Patient Level ◽  
Wide Range ◽  
Patient Reported

Reduction in glucocorticoid exposure is the primary benefit of new biologic treatments in severe asthma, but there is currently no evidence that reduction in glucocorticoid exposure corresponds to a proportionate reduction in associated toxicity.ObjectivesTo use the validated Glucocorticoid Toxicity Index (GTI) to assess change in glucocorticoid toxicity after 12 months treatment with mepolizumab, and compare toxicity change to glucocorticoid reduction and change in patient reported outcome measures (PROMs).MethodsA longitudinal, real world prospective cohort of 101 consecutive patients with severe asthma commenced on mepolizumab in a Specialist UK Regional Severe Asthma clinic. GTI toxicity assessment, cumulative glucocorticoid exposure and PROMs were recorded on commencing mepolizumab (V1), and after 12 months treatment (V2).ResultsThere was significant reduction in oral glucocorticoid exposure (V1 4280 mg prednisolone/year [interquartile range (IQR) 3083, 5475] versus V2 2450 mg prednisolone/year [1243, 3360], p<0.001). Substantial improvements in individual toxicities were observed but did not correlate with oral glucocorticoid reduction. Mean GTI Aggregate Improvement Score (AIS) was −35.7 (sd 57.8) with a wide range in toxicity change at individual patient level (AIS range −165 to +130); 70% (71/101) had a reduction in toxicity (AIS <0), 3% (3/101) had no change (AIS=0) and 27% (27/101) an increase in overall toxicity. Sixty-two (62/101) patients met the AIS minimally clinically important difference of ≤−10, but AIS did not correlate with glucocorticoid reduction or change in PROMs.ConclusionMepolizumab resulted in substantial oral glucocorticoid reduction but this did not correlate with reduction in oral glucocorticoid toxicity, which varies widely at the individual patient level. Oral glucocorticoid reduction is not a comprehensive measure of response to mepolizumab.

scholarly journals Patient-reported outcome measures (PROMs) using the MASK-air® app in severe asthma

2022 ◽  
Author(s):  
Bernardo Sousa-Pinto ◽  
João Fonseca ◽  
Bilun Gemicioglu ◽  
Frederico Regateiro ◽  
Nicola Scichilone ◽  
...  
Keyword(s):  
Severe Asthma ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported

scholarly journals Patient-reported outcome measures in the recovery of adults hospitalised with community-acquired pneumonia: a systematic review

2019 ◽  
Vol 53 (3) ◽  
pp. 1802165 ◽  
Author(s):  
Harry J. Pick ◽  
Charlotte E. Bolton ◽  
Wei Shen Lim ◽  
Tricia M. McKeever
Keyword(s):  
Systematic Review ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Community Acquired Pneumonia ◽  
Assessment Tools ◽  
Post Discharge ◽  
Wide Range ◽  
Patient Reported ◽  
Prisma Statement

Symptomatic and functional recovery are important patient-reported outcome measures (PROMs) in community-acquired pneumonia (CAP) that are increasingly used as trial end-points. This systematic review summarises the literature on PROMs in CAP.Comprehensive searches in accordance with the PRISMA statement were conducted to March 2017. Eligible studies included adults discharged from hospital following confirmed CAP and reporting PROMs.15 studies (n=5644 patients) were included; most were of moderate quality. Studies used a wide range of PROMs and assessment tools. At 4–6 weeks post-discharge, the commonest symptom reported was fatigue (45.0–72.6% of patients, three studies), followed by cough (35.3–69.7%) and dyspnoea (34.2–67.1%); corresponding values from studies restricted by age <65 years (two studies) were lower: fatigue 12.1–25.7%, cough 19.9–31.9% and dyspnoea 16.8–27.5%. Functional impairment 4 weeks post-discharge was reported in 18–51% of patients (two studies), while median time to return to normal activities was between 15 and 28 days (three studies).Substantial morbidity is reported by patients up to 6 weeks post-discharge. There is weak methodological consistency across existing studies. A core set of PROMs for use in future studies is suggested.

The myClinicalOutcomes website: providing real-time, patient-level PROMs data

2012 ◽  
Vol 94 (1) ◽  
pp. 20-21 ◽  
Author(s):  
Dan Williams
Keyword(s):  
Real Time ◽  
Current System ◽  
Low Cost ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Web Based ◽  
Patient Level ◽  
True Value ◽  
Patient Reported ◽  
National Patient

The national patient reported outcome measures (PROMs) programme has been under way since April 2009, yet the true value of capturing and utilising these metrics has yet to be realised. The current system needs to evolve and should deliver real-time, patient-level benefits for more procedures, bringing long-term monitoring into routine clinical practice. The myClinicalOutcomes website is a low-cost, straightforward web-based system that could improve the current situation.

scholarly journals Efficacy of Group Conversation Intervention in Individuals with Severe Profiles of Aphasia

2019 ◽  
Vol 41 (01) ◽  
pp. 071-082
Author(s):  
Elizabeth Hoover ◽  
Alexandra McFee ◽  
Gayle DeDe
Keyword(s):  
Outcome Measures ◽  
Group Treatment ◽  
The United States ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Wide Range ◽  
Patient Reported ◽  
Improved Performance ◽  
Language Measures ◽  
Negative Health Outcomes

AbstractAn estimated 390,000 to 520,000 individuals with severe aphasia (IWSA) currently live in the United States. IWSA experience profound social isolation, which is associated with a wide range of negative health outcomes, including mortality. Treatments for severe aphasia frequently focus on compensatory communication approaches or a discrete communication act rather than on participation-based treatment. The purpose of this study was to determine whether IWSA demonstrated improved performance on standardized language measures, patient-reported outcome measures, and connected speech samples as a result of client-centered conversation group treatment. Results of assessments conducted at pretreatment, posttreatment, and maintenance intervals were variable across participants. All participants demonstrated improvement in at least one of the outcome measures considered. Importantly, none of these measures fully captured how IWSA were able to convey their thoughts in supported conversation. The results lend support for the use of conversation treatment for, and for further study in, this subpopulation of individuals with aphasia.

scholarly journals Scar Assessment Tools: How Do They Compare?

2021 ◽  
Vol 8 ◽  
Author(s):  
Amanda Min Hui Choo ◽  
Yee Siang Ong ◽  
Fadi Issa
Keyword(s):  
Outcome Measures ◽  
Clinical Relevance ◽  
Treatment Strategies ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Assessment Tools ◽  
Scar Assessment ◽  
Wide Range ◽  
Patient Reported

Healing after dermal injury is a complex but imperfect process that results in a wide range of visible scars. The degree of disfigurement is not the sole determinant of a scar's effect on patient well-being, with a number of other factors being critical to outcome. These include cosmetic appearance, symptoms such as itch and pain, functional loss, psychological or social problems, and quality of life. An accurate assessment of these domains can help clinicians measure outcomes, develop, and evaluate treatment strategies. A PubMed literature search was performed up to 31st March 2020. Ten objective scar measurements, four Clinician-Reported Outcome Measures (CROMs), six Patient-Reported Outcome Measures (PROMs), and one combined measure were evaluated for their reliability, clinical relevance, responsiveness to clinical change, and feasibility. Many quantitative tools were limited in their clinical relevance and feasibility, whereas few qualitative CROMs and PROMs have undergone rigorous assessment. This review examines currently available assessment tools, focusing primarily on subjective scar measurements (CROMs, PROMs), and offers a perspective on future directions in the field.

scholarly journals Vigilance: An Unmeasured Patient-Centered Outcome for Ankle Reconstruction

2019 ◽  
Vol 4 (4) ◽  
pp. 2473011419S0006
Author(s):  
Ellie Pinsker ◽  
Joanna E.M. Sale ◽  
Monique A.M. Gignac ◽  
Timothy R. Daniels ◽  
Dorcas E. Beaton
Keyword(s):  
Treatment Outcomes ◽  
Negative Impact ◽  
Patient Reported Outcome Measures ◽  
Daily Basis ◽  
Patient Reported Outcome ◽  
Mental Load ◽  
Patient Centered ◽  
Qualitative Researcher ◽  
Wide Range ◽  
Patient Reported

Category: Ankle, Ankle Arthritis Introduction/Purpose: A wide range of patient-reported outcome measures are used to evaluate ankle reconstruction outcomes, but there is little agreement regarding which best captures patients’ perceptions of illness and treatment outcomes. There has been little exploration of what outcomes are important to patients. Qualitative work offers one approach to try to understand patients’ experiences of ankle reconstruction for treatment of end-stage ankle osteoarthritis. Methods: Individuals were recruited from an existing cohort of persons who had undergone total ankle replacement or ankle fusion. Twenty-five English-speaking individuals who had surgery at least one year prior and were receptive to in-depth interviews were asked to participate following a routine clinic visit. Semi-structured, face-to-face interviews were conducted by a qualitative researcher in a private hospital room. Results: Twenty-five adults (12 women, 13 men) ages 25–82 years were interviewed for 1–2 hours. Participants commonly described a state of having to keep careful watch for potential environmental challenges on a daily basis. ‘Vigilance’ was related to ongoing symptoms (i.e. pain, stiffness) and concerns related to balance, stability, and damage to the fused ankle or implant. Findings indicated that vigilance existed along a continuum with higher levels associated with stress, mental exhaustion, and a negative impact on relationships with friends and family. Vigilance appeared to effect participants’ perception of their surgical outcome, with high levels of vigilance linked to negative perceptions of outcome. The degree to which individuals perceived they needed to be vigilant was influenced by environmental factors like uneven ground or crowds. Conclusion: Vigilance, or the constant appraisal of the environment and personal ability, is not captured by current instruments assessing ankle reconstruction outcomes. However, the mental load and worry associated with high ‘vigilance’ was important to patients and played a role in their perception of outcome, distinct from related pain or functional status. As such, reducing high levels of vigilance appears to be an appropriate target for patient-centered treatment outcomes and one that can be managed or remedied. A thorough outcome battery for ankle reconstruction should consider this domain.

Optimizing electronic capture of patient-reported outcome measures in oncology clinical trials: lessons learned from a qualitative study

2020 ◽  
Vol 9 (17) ◽  
pp. 1195-1204
Author(s):  
Florence D Mowlem ◽  
Brad Sanderson ◽  
Jill V Platko ◽  
Bill Byrom
Keyword(s):  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Lessons Learned ◽  
Structured Interviews ◽  
Patient Reported ◽  
Oncology Clinical Trials ◽  
Anticancer Treatment ◽  
Fit For Purpose ◽  
The Impact ◽  
Electronic Implementation

Aim: To understand the impact of anticancer treatment on oncology patients’ ability to use electronic solutions for completing patient-reported outcomes (ePRO). Materials & methods: Semi-structured interviews were conducted with seven individuals who had experienced a cancer diagnosis and treatment. Results: Participants reported that the following would impact the ability to interact with an ePRO solution: peripheral neuropathy of the hands (4/7), fatigue and/or concentration and memory issues (6/7), where they are in a treatment cycle (5/7). Approaches to improve usability included: larger, well-spaced buttons to deal with finger numbness, the ability to pause a survey and complete at a later point and presenting the recall period with every question to reduce reliance on memory. Conclusion: Symptoms associated with cancers and anticancer treatments can impact the use of technologies. The recommendations for optimizing the electronic implementation of patient-reported outcome instruments in this population provides the potential to improve data quality in oncology trials and places patient needs at the forefront to ensure ‘fit-for-purpose’ solutions.

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