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Longitudinal qualitative assessment of meaningful symptoms and relevance of WATCH-PD digital measures for people with early Parkinson's.
J Neurol
January 2025
Center for Health + Technology, University of Rochester Medical Center, Rochester, NY, USA.
Background: Longitudinal qualitative data on what matters to people with Parkinson's disease are lacking and needed to guide patient-centered clinical care and development of outcome measures.
Objective: To evaluate change over time in symptoms, impacts, and relevance of digital measures to monitor disease progression in early Parkinson's.
Methods: In-depth, online symptom mapping interviews were conducted with 33 people with early Parkinson's at baseline and 1 year later to evaluate (A) symptoms, (B) impacts, and (C) relevance of digital measures to monitor personally relevant symptoms.
Late-onset Systemic Lupus Erythematosus.
Rheumatol Int
January 2025
Department of Rheumatology, Immunology and Internal Medicine, University Hospital in Kraków, Kraków, Poland.
Systemic lupus erythematosus (SLE) is a multisystem autoimmune rheumatic disease (ARD) that results from the dysregulation of multiple innate and adaptive immune pathways. Late-onset SLE (Lo-SLE) is the term used when the disease is first diagnosed after 50-65 years, though the standard age cut-off remains undefined. Defining "late-onset" as lupus with onset after 50 years is more biologically plausible as this roughly corresponds to the age of menopause.
View Article and Find Full Text PDFThe Relationship Between Fibromyalgianess and Clinical Features, Disease Activity in Patients With Systemic Lupus Erythematosus.
Musculoskeletal Care
March 2025
Department of Rheumatology, Karamanoğlu Mehmetbey University, Karaman, Turkey.
Introduction: Fibromyalgia (FM) is a chronic syndrome characterised by widespread pain, fatigue, and symptoms such as sleep disturbances, cognitive impairment, and mood disorders. FM prevalence is notably higher among systemic lupus erythematosus (SLE) patients compared with the general population, often leading to diagnostic challenges. Misinterpreting FM as SLE activity can result in overtreatment.
View Article and Find Full Text PDFPatient experience with acute hepatic porphyria before and after long-term givosiran treatment in a qualitative interview study.
Mol Genet Metab Rep
March 2025
Alnylam Pharmaceuticals, Maidenhead, UK.
Background: Acute hepatic porphyria (AHP) is characterized by debilitating and potentially life-threatening neurovisceral attacks, possible chronic symptoms, and long-term complications. In a phase 1/2 open-label extension (OLE) study and the phase 3 ENVISION study, givosiran led to sustained improvement in annualized attack rate and quality of life (QOL) measures. To capture the patient experience of symptoms and impacts of AHP, and any changes experienced during treatment with givosiran, qualitative interviews were conducted with study participants.
View Article and Find Full Text PDFLongitudinal Improvement of Quality of Life in Children With Legg-Calve-Perthes Disease Treated With Proximal Femoral Varus Osteotomy.
J Pediatr Orthop
January 2025
Department of Orthopaedic Surgery, University of Texas Southwestern Medical Center.
Background: Proximal femoral varus osteotomy (PFVO) is commonly performed to improve femoral head containment and decrease deformity in Legg-Calve-Perthes disease (LCPD). Little is known about how PFVO impacts the quality of life after surgery. The purpose of this study was to determine the longitudinal changes to patient-reported physical, mental, and social health measures after PFVO.
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