Construct validity of PROMIS pain interference, fatigue, and physical function as patient-reported outcomes in adults with idiopathic inflammatory myopathies: An international study from the OMERACT myositis working group.

Background: Validated patient-reported outcome measures to assess disease impact in patients with adult idiopathic inflammatory myopathies (IIMs) are needed. The objective of this study was to assess the construct validity of PROMIS Pain Interference, Fatigue, and Physical Function measures in comparison with core disease activity measures.

Methods: Adults with IIM, excluding inclusion body myositis, from OMERACT Myositis Working Group (MWG) clinic sites completed PROMIS Short Form v1.

The impact of pain on daily activities in patients with idiopathic inflammatory myopathies: Report from the OMERACT myositis working group.

Background: International focus groups with patients with idiopathic inflammatory myopathies (IIM) conducted by the OMERACT Myositis Working Group over the years demonstrated the pain as an important symptom experienced by these patients. In this study, we aimed to examine the frequency and degree of pain interference, the aspects of daily life impacted by pain, and the factors associated with pain interference in adults with IIM.

Methods: This was a prospective observational study with two visits.

Mental health in paediatric and adult myositis-related diseases: current state of research, interventions, and future steps from the MIHRA Psychological Impact Scientific Working Group.

Psychological and emotional well-being are critical aspects of overall health for individuals with chronic rheumatologic conditions. Mental health-related literature, however, predominantly focuses on systemic lupus erythematosus or rheumatoid arthritis, with limited emphasis on idiopathic inflammatory myopathies (IIMs). High proportions of those with juvenile myositis report psychological distress at levels warranting mental health referral.

Collaborative research in myositis-related disorders: MIHRA, a global shared community model.

Myositis International Health and Research Collaborative Alliance (MIHRA) is a newly formed purpose-built non-profit charitable research organization dedicated to accelerating international clinical trial readiness, global professional and lay education, career development and rare disease advocacy in IIM-related disorders. In its long form, the name expresses the community's scope of engagement and intent. In its abbreviation, MIHRA, conveys linguistic roots across many languages, that reflects the IIM community's spirit with meanings such as kindness, community, goodness, and peace.

Patient outcomes in longitudinal observational studies (POLOS) of rheumatoid arthritis: Determining the OMERACT core domain set.

Objective: To define and select rheumatoid arthritis (RA)-specific core domain set for Longitudinal Observational Studies (LOS) within the Outcome Measures in Rheumatology (OMERACT) framework.

Methods: A three-round online Delphi exercise, including patient research partners (PRPs) and other community partners in healthcare, was conducted. Domains scored 7-9 (i.

Clinical Relevance of Epidural Steroid Injections on Lumbosacral Radicular Syndrome-related Synptoms: Systematic Review and Meta-Analysis.

Objectives: Epidural steroid injections (ESIs) can be used to reduce lumbosacral radicular syndrome (LRS) related pain. The clinical relevance of ESIs are currently unknown. This systematic review and meta-analyses aims to assess whether ESIs are clinically relevant for patients with LRS.

Responders to Exercise Therapy in Patients with Osteoarthritis of the Hip: A Systematic Review and Meta-Analysis.

The Outcome Measures in Rheumatology workgroup (OMERACT), together with the Osteoarthritis Research Society International (OARSI) developed the OMERACT-OARSI responder criteria. These criteria are used to determine if a patient with osteoarthritis (OA) 'responds' to therapy, meaning experiences a clinically relevant effect of therapy. Recently, more clinical OA trials report on this outcome and most OA trials have data to calculate the number of responders according to these criteria.

Assessing the content validity of patient-reported outcome measures in adult myositis: A report from the OMERACT myositis working group.

Objective: To investigate the content validity of several patient-reported outcome measures (PROMs) in patients with idiopathic inflammatory myopathies (IIM).

Methods: Seven individual PROM instruments were selected by the Outcome Measures in Rheumatology (OMERACT) Myositis Working Group relating to the following domains: pain, fatigue, physical function and physical activity. Twenty patients from the Johns Hopkins Myositis Center were selected for one-on-one face-to-face or phone interviews for cognitive interviewing of individual PROMs to assess comprehension and content validity.

OMERACT 2018 Modified Patient-reported Outcome Domain Core Set in the Life Impact Area for Adult Idiopathic Inflammatory Myopathies.

Objective: To present and vote on a myositis modified patient-reported outcome core domain set in the life impact area at the Outcome Measures in Rheumatology (OMERACT) 2018.

Methods: Based on results from international focus groups and Delphi surveys, a draft core set was developed.

Results: Domains muscle symptoms, fatigue, level of physical activity, and pain reached ≥ 70% consensus and were mandatory to assess in all trials.

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

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.

Advancing the Development of Patient-reported Outcomes for Adult Myositis at OMERACT 2016: An International Delphi Study.

Objective: To define a set of core patient-reported domains and respective instruments for use in idiopathic inflammatory myopathies (IIM). Previously, we reported a systematic literature review on patient-reported outcomes (PRO) in IIM followed by conducting international focus groups to elicit patient perspectives of myositis symptoms and effects.

Methods: Based on qualitative content analysis of focus groups, an initial list of 26 candidate domains was constructed.

Comparing the hta core model with a national health technology assessment report.

Objectives: The HTA Core Model is a framework for producing health technology assessments (HTAs) in a structured format. The Model splits the content of a HTA into assessment elements. The objective is to explore the adaptability of these assessment elements in national report production in a pilot case study comparing a national HTA report and the HTA Core Model.

Difference in quality of life, fatigue and societal participation between living and deceased donor kidney transplant recipients.

Purpose of this study was to assess whether living (LD) and deceased donor (DD) kidney transplant recipients differ in health-related quality of life (HRQoL), fatigue and societal participation, depending on time since transplantation and after adjustment for clinical and demographic variables. A questionnaire study was performed among 309 LD and 226 DD recipients (response rate 74% and 61%) transplanted between 1997 and 2009. After adjustment for age, sex, and education, LD recipients transplanted less than or equal to five yr ago experienced better HRQoL than DD recipients on the domains' role limitations due to physical problems, general health perception, and on the physical component summary score (all p < 0.

Decision making around living and deceased donor kidney transplantation: a qualitative study exploring the importance of expected relationship changes.

Background: Limited data exist on the impact of living kidney donation on the donor-recipient relationship. Purpose of this study was to explore motivations to donate or accept a (living donor) kidney, whether expected relationship changes influence decision making and whether relationship changes are actually experienced.

Methods: We conducted 6 focus groups in 47 of 114 invited individuals (41%), asking retrospectively about motivations and decision making around transplantation.

Reduced quality of life in living kidney donors: association with fatigue, societal participation and pre-donation variables.

Health related quality of life (HRQoL) of living kidney donors on average is good, but some donors experience a low HRQoL after donation. This study assessed the prevalence of reduced HRQoL and explored associations with pre- and post-donation variables. 316 donors (response rate 74%) who donated a kidney between 1997 and 2009 filled in a questionnaire.

Is the impact of hospital performance data greater in patients who have compared hospitals?

Background: Public information on average has limited impact on patients' hospital choice. However, the impact may be greater in consumers who have compared hospitals prior to their hospital choice. We therefore assessed whether patients who have compared hospitals based their hospital choice mainly on public information, rather than e.

Functional capacity and actual daily activity do not contribute to patient satisfaction after total knee arthroplasty.

Background: After total knee arthroplasty (TKA) only 75-89% of patients are satisfied. Because patient satisfaction is a prime goal of all orthopaedic procedures, optimization of patient satisfaction is of major importance. Factors related to patient satisfaction after TKA have been explored, but no studies have included two potentially relevant factors, i.