Development of Harmonized Outcome Measures for Use in Patient Registries and Clinical Practice: Methods and Lessons Learned

2019 ◽  
Author(s):  
Michelle B. Leavy ◽  
Claudia Schur ◽  
Ferhat Q. Kassamali ◽  
Margaret Edder Johnson ◽  
Raj Sabharwal ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Outcome Measures ◽  
Lessons Learned ◽  
Patient Registries ◽  
Practice Methods

scholarly journals Harmonized outcome measures for use in asthma patient registries and clinical practice

2019 ◽  
Vol 144 (3) ◽  
pp. 671-681.e1 ◽  
Author(s):  
Richard E. Gliklich ◽  
Mario Castro ◽  
Michelle B. Leavy ◽  
Valerie G. Press ◽  
Amisha Barochia ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Outcome Measures ◽  
Asthma Patient ◽  
Patient Registries

scholarly journals Harmonized outcome measures for use in atrial fibrillation patient registries and clinical practice

Heart Rhythm ◽  
2019 ◽  
Vol 16 (1) ◽  
pp. e3-e16 ◽  
Author(s):  
Hugh Calkins ◽  
Richard E. Gliklich ◽  
Michelle B. Leavy ◽  
Jonathan P. Piccini ◽  
Jonathan C. Hsu ◽  
...  
Keyword(s):  
Atrial Fibrillation ◽  
Clinical Practice ◽  
Outcome Measures ◽  
Atrial Fibrillation Patient ◽  
Patient Registries

Harmonized outcome measures for use in degenerative lumbar spondylolisthesis patient registries and clinical practice

2021 ◽  
pp. 1-9
Author(s):  
Robert E. Harbaugh ◽  
Clinton Devin ◽  
Michelle B. Leavy ◽  
Zoher Ghogawala ◽  
Kristin R. Archer ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Outcome Measures ◽  
Outcome Measure ◽  
Research Data ◽  
Patient Registries ◽  
Data Infrastructure ◽  
Degenerative Lumbar Spondylolisthesis ◽  
Patient Reported ◽  
Research Questions ◽  
Lumbar Spondylolisthesis

OBJECTIVE The development of new treatment approaches for degenerative lumbar spondylolisthesis (DLS) has introduced many questions about comparative effectiveness and long-term outcomes. Patient registries collect robust, longitudinal data that could be combined or aggregated to form a national and potentially international research data infrastructure to address these and other research questions. However, linking data across registries is challenging because registries typically define and capture different outcome measures. Variation in outcome measures occurs in clinical practice and other types of research studies as well, limiting the utility of existing data sources for addressing new research questions. The purpose of this project was to develop a minimum set of patient- and clinician-relevant standardized outcome measures that are feasible for collection in DLS registries and clinical practice. METHODS Nineteen DLS registries, observational studies, and quality improvement efforts were invited to participate and submit outcome measures. A stakeholder panel was organized that included representatives from medical specialty societies, health systems, government agencies, payers, industries, health information technology organizations, and patient advocacy groups. The panel categorized the measures using the Agency for Healthcare Research and Quality’s Outcome Measures Framework (OMF), identified a minimum set of outcome measures, and developed standardized definitions through a consensus-based process. RESULTS The panel identified and harmonized 57 outcome measures into a minimum set of 10 core outcome measure areas and 6 supplemental outcome measure areas. The measures are organized into the OMF categories of survival, clinical response, events of interest, patient-reported outcomes, and resource utilization. CONCLUSIONS This effort identified a minimum set of standardized measures that are relevant to patients and clinicians and appropriate for use in DLS registries, other research efforts, and clinical practice. Collection of these measures across registries and clinical practice is an important step for building research data infrastructure, creating learning healthcare systems, and improving patient management and outcomes in DLS.

Harmonized Outcome Measures for Use in Depression Patient Registries and Clinical Practice

2020 ◽  
Vol 172 (12) ◽  
pp. 803-809 ◽  
Author(s):  
Richard E. Gliklich ◽  
Michelle B. Leavy ◽  
Lisa Cosgrove ◽  
Gregory E. Simon ◽  
Bradley N. Gaynes ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Outcome Measures ◽  
Patient Registries

scholarly journals In Pursuit of an Effective Treatment: the Past, Present and Future of Clinical Trials in Inclusion Body Myositis

2021 ◽  
Author(s):  
A. M. Snedden ◽  
J. B. Lilleker ◽  
H. Chinoy
Keyword(s):  
Clinical Practice ◽  
Effective Treatment ◽  
Inclusion Body ◽  
Therapeutic Effect ◽  
Outcome Measures ◽  
Inclusion Body Myositis ◽  
Cytotoxic T Cells ◽  
Treatment Options ◽  
Trial Methodology ◽  
Short Treatment

Abstract Purpose of review No clinical trial in sporadic inclusion body myositis (IBM) thus far has shown a clear and sustained therapeutic effect. We review previous trial methodology, explore why results have not translated into clinical practice, and suggest improvements for future IBM trials. Recent findings Early trials primarily assessed immunosuppressive medications, with no significant clinical responses observed. Many of these studies had methodological issues, including small participant numbers, nonspecific diagnostic criteria, short treatment and/or assessment periods and insensitive outcome measures. Most recent IBM trials have instead focused on nonimmunosuppressive therapies, but there is mounting evidence supporting a primary autoimmune aetiology, including the discovery of immunosuppression-resistant clones of cytotoxic T cells and anti-CN-1A autoantibodies which could potentially be used to stratify patients into different cohorts. The latest trials have had mixed results. For example, bimagrumab, a myostatin blocker, did not affect the 6-min timed walk distance, whereas sirolimus, a promotor of autophagy, did. Larger studies are planned to evaluate the efficacy of sirolimus and arimoclomol. Summary Thus far, no treatment for IBM has demonstrated a definite therapeutic effect, and effective treatment options in clinical practice are lacking. Trial design and ineffective therapies are likely to have contributed to these failures. Identification of potential therapeutic targets should be followed by future studies using a stratified approach and sensitive and relevant outcome measures.

scholarly journals The Role of Research in Guiding Treatment for Women’s Health: A Qualitative Study of Traditional Chinese Medicine Acupuncturists

2021 ◽  
Vol 18 (2) ◽  
pp. 834
Author(s):  
Mike Armour ◽  
Debra Betts ◽  
Kate Roberts ◽  
Susanne Armour ◽  
Caroline A. Smith
Keyword(s):  
Clinical Practice ◽  
Women’S Health ◽  
Women's Health ◽  
Clinical Decision ◽  
Health Conditions ◽  
Case Histories ◽  
Research Literacy ◽  
The Right ◽  
Practice Methods

Background: Surveys of acupuncture practitioners worldwide have shown an increase in the use of acupuncture to treat women’s health conditions over the last ten years. Published studies have explored the effectiveness of acupuncture for various conditions such as period pain, fertility, and labor induction. However, it is unclear what role, if any, peer-reviewed research plays in guiding practice. Methods: Acupuncturists with a significant women’s health caseload were interviewed online in three small groups to explore factors that contribute to acupuncturists’ clinical decision made around treatment approaches and research. Results: Eleven practitioners participated in the focus groups. The overarching theme that emerged was one of ‘Not mainstream but a stream.’ This captured two themes relating to acupuncture as a distinct practice: ‘working with what you’ve got’ as well as ‘finding the right lens’, illustrating practitioners’ perception of research needing to be more relevant to clinical practice. Conclusions: Acupuncture practitioners treating women’s health conditions reported a disconnect between their clinical practice and the design of clinical trials, predominantly due to what they perceived as a lack of individualization of treatment. Case histories were popular as a learning tool and could be used to support increasing research literacy.

scholarly journals Lessons learned from the delivery of virtual integrative oncology interventions in clinical practice and research during the COVID-19 pandemic

2021 ◽  
Author(s):  
Robert Knoerl ◽  
Carolyn S. Phillips ◽  
Juliana Berfield ◽  
Heather Woods ◽  
Meghan Acosta ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Lessons Learned ◽  
Integrative Oncology

You’ve heard about outcome measures, so how do you use them? Integrating clinically relevant outcome measures in orthotic management of stroke

2012 ◽  
Vol 37 (1) ◽  
pp. 30-42 ◽  
Author(s):  
Christopher Robinson ◽  
Stefania Fatone
Keyword(s):  
Clinical Practice ◽  
Outcome Measures ◽  
Careful Consideration ◽  
International Classification Of Functioning ◽  
Common Goal ◽  
Disability And Health ◽  
Healthcare Environment ◽  
Relevant Outcome ◽  
Selection Of

In today’s healthcare environment it is increasingly important to be able to quantify the amount of change associated with a given intervention; this can be accomplished using one or more appropriate outcome measures. However, the selection and integration of outcome measures within clinical practice requires careful consideration. This includes identification of the measure construct which can be assisted by the International Classification of Functioning, Disability, and Health; selection of outcome measures based on need, appropriateness and feasibility; and careful use in regular clinical practice including data collection, analysis and re-assessment of the process. We describe this process, focusing on orthotic management of stroke, in particular the improvement of mobility as a common goal. Clinical relevance The growing emphasis on improved documentation of patient care and outcomes requires that clinicians integrate clinically relevant outcome measures into their practice. We suggest a process to assist clinicians integrate outcome measures into clinical practice with a particular emphasis on the orthotic management of stroke.

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