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.

scholarly journals Perceptions of Patients, Caregivers, and Healthcare Providers of Idiopathic Inflammatory Myopathies: An International OMERACT Study

2018 ◽  
Vol 46 (1) ◽  
pp. 106-111 ◽  
Author(s):  
Christopher A. Mecoli ◽  
Jin Kyun Park ◽  
Helene Alexanderson ◽  
Malin Regardt ◽  
Merrilee Needham ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Qualitative Content Analysis ◽  
Healthcare Providers ◽  
The United States ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Idiopathic Inflammatory Myopathies ◽  
Inflammatory Myopathies ◽  
Patient Reported ◽  
Initial List

Objective.Patient-reported outcome measures (PROM) that incorporate the patient perspective have not been well established in idiopathic inflammatory myopathies (IIM). As part of our goal to develop IIM-specific PROM, the Outcome Measures in Rheumatology (OMERACT) Myositis special interest group sought to determine which aspects of disease and its effects are important to patients and healthcare providers (HCP).Methods.Based on a prior qualitative content analysis of focus groups, an initial list of 24 candidate domains was constructed. We subsequently conducted an international survey to identify the importance of each of the 24 domains to be assessed in clinical research. Patients with IIM, their caregivers, and HCP treating IIM completed the survey.Results.In this survey, a total of 638 respondents completed the survey, consisting of 510 patients, 101 HCP, and 27 caregivers from 48 countries. Overall, patients were more likely to rank “fatigue,” “cognitive impact,” and “difficulty sleeping” higher compared with HCP, who ranked “joint symptoms,” “lung symptoms,” and “dysphagia” higher. Both patients and providers rated muscle symptoms as their top domain. In general, patients from different countries were in agreement on which domains were most important. One notable exception was that patients from Sweden and the Netherlands ranked lung symptoms significantly higher compared to other countries including the United States and Australia (mean weighted rankings of 2.86 and 2.04 vs 0.76 and 0.80, respectively; p < 0.0001).Conclusion.Substantial differences exist in how IIM is perceived by patients compared to HCP, with different domains prioritized. In contrast, patients’ ratings across the world were largely similar.

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.

Impact of Depression on Patient-Reported Outcome Measures After Lumbar Spine Decompression

Spine ◽  
2018 ◽  
Vol 43 (6) ◽  
pp. 434-439 ◽  
Author(s):  
Robert K. Merrill ◽  
Lukas P. Zebala ◽  
Colleen Peters ◽  
Sheeraz A. Qureshi ◽  
Steven J. McAnany
Keyword(s):  
Lumbar Spine ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported

Preoperative Opioid Use in Patients Undergoing Common Hand Surgeries

Hand ◽  
2021 ◽  
pp. 155894472097412
Author(s):  
Ali Aneizi ◽  
Dominique Gelmann ◽  
Dominic J. Ventimiglia ◽  
Patrick M. J. Sajak ◽  
Vidushan Nadarajah ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Hand Surgery ◽  
Patient Characteristics ◽  
Patient Reported Outcome Measures ◽  
Pain Scale ◽  
Patient Reported Outcome ◽  
Measurement Information ◽  
Opioid Use ◽  
Patient Reported ◽  
Opioid Users

Background: The objectives of this study were to determine the baseline patient characteristics associated with preoperative opioid use and to establish whether preoperative opioid use is associated with baseline patient-reported outcome measures in patients undergoing common hand surgeries. Methods: Patients undergoing common hand surgeries from 2015 to 2018 were retrospectively reviewed from a prospective orthopedic registry at a single academic institution. Medical records were reviewed to determine whether patients were opioid users versus nonusers. On enrollment in the registry, patients completed 6 Patient-Reported Outcomes Measurement Information System (PROMIS) domains (Physical Function, Pain Interference, Fatigue, Social Satisfaction, Anxiety, and Depression), the Brief Michigan Hand Questionnaire (BMHQ), a surgical expectations questionnaire, and Numeric Pain Scale (NPS). Statistical analysis included multivariable regression to determine whether preoperative opioid use was associated with patient characteristics and preoperative scores on patient-reported outcome measures. Results: After controlling for covariates, an analysis of 353 patients (opioid users, n = 122; nonusers, n = 231) showed that preoperative opioid use was associated with higher American Society of Anesthesiologists class (odds ratio [OR], 2.88), current smoking (OR, 1.91), and lower body mass index (OR, 0.95). Preoperative opioid use was also associated with significantly worse baseline PROMIS scores across 6 domains, lower BMHQ scores, and NPS hand scores. Conclusions: Preoperative opioid use is common in hand surgery patients with a rate of 35%. Preoperative opioid use is associated with multiple baseline patient characteristics and is predictive of worse baseline scores on patient-reported outcome measures. Future studies should determine whether such associations persist in the postoperative setting between opioid users and nonusers.

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