scholarly journals Stiffness Is the Cardinal Symptom of Inflammatory Musculoskeletal Diseases, Yet Still Variably Measured: Report from the OMERACT 2016 Stiffness Special Interest Group

2016 ◽  
Vol 44 (12) ◽  
pp. 1904-1910 ◽  
Author(s):  
Serena Halls ◽  
Premarani Sinnathurai ◽  
Sarah Hewlett ◽  
Sarah L. Mackie ◽  
Lyn March ◽  
...  
Keyword(s):  
Literature Review ◽  
Conceptual Model ◽  
Interest Group ◽  
Special Interest ◽  
Musculoskeletal Diseases ◽  
Model Development ◽  
Early Morning ◽  
Special Interest Group ◽  
Patient Reported ◽  
Cardinal Symptom

Objective.The objectives of the Outcome Measures in Rheumatology (OMERACT) Stiffness special interest group (SIG) are to characterize stiffness as an outcome in rheumatic disease and to identify and validate a stiffness patient-reported outcome (PRO) in rheumatology.Methods.At OMERACT 2016, international groups presented and discussed results of several concurrent research projects on stiffness: a literature review of rheumatoid arthritis (RA) stiffness PRO measures, a qualitative investigation into the RA and polymyalgia rheumatica patient perspective of stiffness, data-driven stiffness conceptual model development, development and testing of an RA stiffness PRO measure, and a quantitative work testing stiffness items in patients with RA and psoriatic arthritis.Results.The literature review identified 52 individual stiffness PRO measures assessing morning or early morning stiffness severity/intensity or duration. Items were heterogeneous, had little or inconsistent psychometric property evidence, and did not appear to have been developed according to the PRO development guidelines. A poor match between current stiffness PRO and the conceptual model identifying the RA patient experience of stiffness was identified, highlighting a major flaw in PRO selection according to the OMERACT filter 2.0.Conclusion.Discussions within the Stiffness SIG highlighted the importance of further research on stiffness and defined a research agenda.

scholarly journals Patient-reported Outcomes and Adult Patients’ Disease Experience in the Idiopathic Inflammatory Myopathies. Report from the OMERACT 11 Myositis Special Interest Group

2014 ◽  
Vol 41 (3) ◽  
pp. 581-592 ◽  
Author(s):  
Helene Alexanderson ◽  
Maria Del Grande ◽  
Clifton O. Bingham ◽  
Ana-Maria Orbai ◽  
Catherine Sarver ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Interest Group ◽  
Special Interest ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Special Interest Group ◽  
Idiopathic Inflammatory Myopathies ◽  
Inflammatory Myopathies ◽  
Emotional Life ◽  
Patient Reported

The newly formed Outcome Measures in Rheumatology (OMERACT) Myositis Special Interest Group (SIG) was established to examine patient-reported outcome measures (PROM) in myositis. At OMERACT 11, a literature review of PROM used in the idiopathic inflammatory myopathies (IIM) and other neuromuscular conditions was presented. The group examined in more detail 2 PROM more extensively evaluated in patients with IIM, the Myositis Activities Profile, and the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire, through the OMERACT filter of truth, discrimination, and feasibility. Preliminary results from a qualitative study of patients with myositis regarding their symptoms were discussed that emphasized the range of symptoms experienced: pain, physical tightness/stiffness, fatigue, disease effect on emotional life and relationships, and treatment-related side effects. Following discussion of these results and following additional discussions since OMERACT 11, a research agenda was developed. The next step in evaluating PROM in IIM will require additional focus groups with a spectrum of patients with different myositis disease phenotypes and manifestations across a range of disease activity, and from multiple international settings. The group will initially focus on dermatomyositis and polymyositis in adults. Qualitative analysis will facilitate the identification of commonalities and divergent patient-relevant aspects of disease, insights that are critical given the heterogeneous manifestations of these diseases. Based on these qualitative studies, existing myositis PROM can be examined to more thoroughly assess content validity, and will be important to identify gaps in domain measurement that will be required to develop a preliminary core set of patient-relevant domains for IIM.

Conservative bladder management in advanced multiple sclerosis

2005 ◽  
Vol 11 (6) ◽  
pp. 694-699 ◽  
Author(s):  
D De Ridder ◽  
D Ost ◽  
F Van der Aa ◽  
M Stagnaro ◽  
C Beneton ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Literature Review ◽  
Interest Group ◽  
Special Interest ◽  
Social Impact ◽  
Bowel Dysfunction ◽  
High Variability ◽  
Special Interest Group ◽  
Indwelling Catheters ◽  
Bladder Management

Anticholinergics and intermittent catheterization are the cornerstones of bladder management in early multiple sclerosis (MS). In advanced MS however, bladder management is based more on tradition than on evidence. Nurses seem to deal with catheter problems and chronic incontinence. Despite the abundant use of indwelling catheters, there is a lack for guidelines on catheter-induced problems. The psychosexual and social impact of bladder problems in advanced MS is often neglected. The international multidisciplinary special interest group on sexual, urological and bowel dysfunction in MS (SUBDIMS) as a special interest group of the Rehabilitation in Multiple Sclerosis (RIMS) was confronted with a high variability in practice and a lack of guidelines. A literature review was prepared during three multidisciplinary expert meetings. This review will be the basis of further initiatives to improve the urological treatment of patients with advanced MS.

scholarly journals Evidence for Updating the Core Domain Set of Outcome Measures for Juvenile Idiopathic Arthritis: Report from a Special Interest Group at OMERACT 2016

2017 ◽  
Vol 44 (12) ◽  
pp. 1884-1888 ◽  
Author(s):  
Esi M. Morgan ◽  
Meredith P. Riebschleger ◽  
Jennifer Horonjeff ◽  
Alessandro Consolaro ◽  
Jane E. Munro ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Literature Review ◽  
Outcome Measures ◽  
Interest Group ◽  
Special Interest ◽  
Working Group ◽  
Qualitative Studies ◽  
Special Interest Group ◽  
The Core ◽  
Core Set

Objective.The current Juvenile Idiopathic Arthritis (JIA) Core Set was developed in 1997 to identify the outcome measures to be used in JIA clinical trials using statistical and consensus-based techniques, but without patient involvement. The importance of patient/parent input into the research process has increasingly been recognized over the years. An Outcome Measures in Rheumatology (OMERACT) JIA Core Set Working Group was formed to determine whether the outcome domains of the current core set are relevant to those involved or whether the core set domains should be revised.Methods.Twenty-four people from the United States, Canada, Australia, and Europe, including patient partners, formed the working group. Guided by the OMERACT Filter 2.0 process, we performed (1) a systematic literature review of outcome domains, (2) a Web-based survey (142 patients, 343 parents), (3) an idea-generation study (120 parents), (4) 4 online discussion boards (24 patients, 20 parents), and (5) a Special Interest Group (SIG) activity at the OMERACT 13 (2016) meeting.Results.A MEDLINE search of outcome domains used in studies of JIA yielded 5956 citations, of which 729 citations underwent full-text review, and identified additional domains to those included in the current JIA Core Set. Qualitative studies on the effect of JIA identified multiple additional domains, including pain and participation. Twenty-one participants in the SIG achieved consensus on the need to revise the entire JIA Core Set.Conclusion.The results of qualitative studies and literature review support the need to expand the JIA Core Set, considering, among other things, additional patient/parent-centered outcomes, clinical data, and imaging data.

scholarly journals A Patient-reported Outcome Measure for Effect of Glucocorticoid Therapy in Adults with Inflammatory Diseases Is Needed: Report from the OMERACT 2016 Special Interest Group

2017 ◽  
Vol 44 (11) ◽  
pp. 1754-1758 ◽  
Author(s):  
Rachel J. Black ◽  
Joanna C. Robson ◽  
Susan M. Goodman ◽  
Elizabeth Hoon ◽  
Lana Y.H. Lai ◽  
...  
Keyword(s):  
Interest Group ◽  
Special Interest ◽  
Research Agenda ◽  
Outcome Measure ◽  
Age Groups ◽  
Patient Reported Outcome ◽  
Special Interest Group ◽  
Duration Of Treatment ◽  
Patient Reported Outcome Measure ◽  
Patient Reported

Objective.The need for a standardized instrument to measure the effect of glucocorticoid (GC) therapy has been well documented in the literature. The aim of the first GC Special Interest Group was to define a research agenda around the development of a patient-reported outcome measure (PROM) in this area.Methods.The results of a background literature search and the preliminary results of a pilot survey and 2 qualitative studies were presented to facilitate the development of a research agenda.Results.It was agreed that there was a need for a data-driven PROM that identified both positive and negative effects of GC therapy to be used across all inflammatory indications for systemic GC use in adults. A research agenda was developed, consisting of further qualitative work to assess the effect of GC across different groups including various indications for GC use, different age groups, different dosages, and duration of treatment.Conclusion.There was agreement on the need for a PROM in this area and a research agenda was set.

Special Interest Group 13 (Swallowing and Swallowing Disorders)

ASHA Leader ◽  
2012 ◽  
Vol 17 (5) ◽  
Author(s):  
Debra Suiter ◽  
Laurie Sterling ◽  
Lynne Brady Wagner
Keyword(s):  
Interest Group ◽  
Special Interest ◽  
Swallowing Disorders ◽  
Special Interest Group ◽  
Group 13
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