Patients with generalized myasthenia gravis (gMG) experience functional impairment due to MG symptoms. This study aimed assess, from the patient perspective, symptoms, impacts, and treatment goals of individuals diagnosed gMG. Semi-structured, in-depth concept-elicitation interviews were conducted 28 gMG in United States. Participants reported symptoms that affected many body regions functions, an average 16 per participant. The most frequently eyelid drooping (93%), physical fatigue (89%),...

Abstract Background Hereditary angioedema (HAE) is a rare, autosomal dominant disorder causing swelling attacks in various parts of the body, resulting impacts on health-related quality life (HRQoL). The symptoms HAE and its HRQoL have been well-documented adults; however, relatively little known about experiences adolescents with HAE. objective this study was to use qualitative interviews investigate how experience their HRQoL. Methods This non-interventional, Participants were recruited...

AbstractAbstractObjective: The purpose of this study was to investigate heath disparities as a function race and gender the extent which socioeconomic factors mediate among participants with spinal cord injury.Design: Survey methodology. Cross-sectional data.Setting: A large Southeastern specialty hospital.Participants: There were 1,342 in current analysis, all whom identified from patient records. 3 inclusion criteria: (a) traumatic SCI, (b) at least 18 years age time study, (c) injury...

We investigated relationships among personality, locus of control, and current post-injury employment status for 1,391 participants with spinal cord injury. Participants higher internality locus-of-control scores activity (personality) reported more favorable outcomes. Higher on chance powerful others (locus control), neuroticism, aggression/hostility were associated diminished

Chronic pain is a significant public health burden affecting more Americans than cardiovascular disease, diabetes, and cancer combined. Veterans are disproportionately affected by chronic pain. Among previously deployed soldiers veterans, the prevalence of estimated between 44% 60%.The objective this research was to develop pilot-test Health eRide: Your Journey Managing Pain, mobile self-management program for musculoskeletal veterans. Based on transtheoretical model behavior change,...

The purpose of this study was to identify gender differences in subjective well-being among 309 African-American participants with spinal cord injury (SCI).Cross-sectional.A Southeastern specialty hospital.There were a total participants, all whom African-Americans. All had traumatic SCI, at least 18 years or older the time study, and minimum one year passed since SCI onset.Measures included Life Situation Questionnaire--Revised, Purpose scale, Older Adult Health Mood Questionnaire.Multiple...

Abstract This study describes the health-related quality of life (HRQoL) and symptom-specific functional impairment patients with paroxysmal nocturnal hemoglobinuria (PNH) in a real-world setting. US-based adults PNH treated parenterally administered complement inhibitor (PACI) for ≥ 6 months completed an online, cross-sectional, observational survey; subset also participated semi-structured qualitative interviews. The survey included PROMIS ® 29 + 2 Profile v2.1 (PROMIS 2) to measure HRQoL....

A recently published paper found that higher levelsof physical activity (PA) and fitness were associatedwith better Health Related Quality of Life (HRQOL)in older people discharged from hospital [1].The authors recommend, “physical activity... whilein hospital... may be important in order to encour-age patients actively preserve independence andHRQOL”, specifically “targeting those with lowerlevelsofphysicalactivity... .andmultiplecomorbidi-ties”. Studies have shown small positive benefits...

Purpose: Patients with transthyretin amyloidosis (ATTR) experience a wide variety of symptoms and impacts on health-related quality life (HRQoL). However, the lack an ATTR-specific patient-reported outcome (PRO) measure has made consistent measurement HRQoL in ATTR challenging. This paper describes development conceptual model subsequent content for Transthyretin Amyloidosis – Quality Life Questionnaire (ATTR-QOL), PRO measure. Methods: was cross-sectional, non-interventional, US-based...

Abstract This article presents the results to date of an ongoing research project Rehabilitation Engineering Research Center on Mobile Wireless Technologies for Persons with Disabilities (Wireless RERC), which was established in fall 2001. The purpose this is identify, prioritize, and disseminate information about ergonomic needs users disabilities mobile wireless technologies. describes findings two parts project: (a) a survey user needs, both paper accessible Web-based formats; (b) focus...

The purpose of this study was to advance the understanding preventive health behaviors women with spinal cord injury (SCI) by comparing frequency (a) between SCI and in general population, (b) among as a function race/ethnicity socioeconomic status (SES).Telephone interviews.191 who had been treated at 1 4 Model Systems hospitals. sample included 66 white women, 59 African American 22 Indian 44 Hispanic women.The Behavioral Risk Factor Surveillance System.Study participants reported...

The SF-6Dv2 classification system assesses health states in six domains-physical functioning, role function, bodily pain, vitality, social and mental health. Scores have previously been derived from the SF-36v2® Health Survey. We aimed to develop a six-item stand-alone Utility Survey (SF-6Dv2 HUS) evaluate its comprehensibility.Two forms of HUS were developed for evaluation. Form A had 6 questions with 5-6 response choices, while B used headings statements describing levels within each...

This study aimed to gain insight into decision-making strategies individuals used when evaluating pairs of SF-6Dv2 health states in discrete choice experiments (DCEs).This qualitative, cross-sectional, noninterventional asked participants use a think-aloud approach compare DCEs. Thematic analysis focused on comprehension and cognitive make decisions.Participants (N = 40) 3 main completing DCEs: (1) trading, (2) reinterpretation, (3) relying previous experience. Trading was the most common...

The purpose of this study was to extend a previous evaluation neuroscience nursing research an assessment the published during 1990s--the Decade Brain. conducted assess focus and identify strategies scientific methods. Journal Neuroscience Nursing, Nursing Research, Research in & Health, Western were canvassed. An form developed by authors used evaluate selected articles between January 1989 December 2000. number studies journals increased substantially 1990s. focused more on individuals...

Mapping or matching the items in a clinical outcome assessment (COA) to concepts that define condition is common method for evaluating COA's concept coverage. The purpose of this research was address lack formal guidance conducting task by developing framework best practices COA mapping and applying it case study. To develop framework, we examined literature created draft set which then reviewed experienced researchers through focus groups before being finalized. conduct study, extracted...

Amyloid transthyretin (ATTR) amyloidosis is a rare, progressive, and fatal disease. The ATTR Patient Symptom Survey (ATTR-PSS) was previously developed through literature review concept elicitation input from clinicians patients revised after evaluation by patient focus group. This study further evaluated the content validity of ATTR-PSS qualitative cognitive debriefing interviews with patients.Seven 10 were interviewed individually regarding their overall impressions, clarity...

Background: Chronic pain creates a significant public health burden and disproportionately affects veterans. Over 56% of Operation Iraqi Freedom (OIF), Enduring (OEF), New Dawn (OND) veterans have diagnosis chronic pain. The frequency extent pain, posttraumatic stress disorder (PTSD), traumatic brain injury, the co-occurrence all three conditions (post-deployment multi-symptom disorder, PMD) can complicate reduce effectiveness traditional treatments for Taken in combination with opioid...

Background: Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that can lead to irreversible organ damage (OD). Data describing the patient burden of OD, as compared with SLE without are limited. Objective: To develop comprehensive conceptual model experienced by patients living SLE-associated OD. Methods: There were three phases this qualitative study. First, targeted literature review was conducted inform draft model. Second, key opinion leaders (KOLs) interviewed assess...