Results 11 to 20 of about 170,233 (200)

Unheard and Under‐Supported: Health‐Related Quality of Life in Children, Adolescents, and Young Adults With Sickle Cell Disease

open access: yesPediatric Blood &Cancer, EarlyView.
Abstract Background Sickle cell disease (SCD) is an autosomal recessive hemoglobinopathy affecting millions of individuals worldwide. The clinical expression and psychosocial burden of SCD vary widely across geographical, cultural, and healthcare system contexts, underscoring the need for setting‐specific approaches to assessment.
Desiré Fantasia   +7 more
wiley   +1 more source

Clinical Course and Impact of Breaks in Therapy for Children With Relapsed/Refractory Solid Tumors

open access: yesPediatric Blood &Cancer, EarlyView.
ABSTRACT Introduction Pediatric relapsed or refractory (R/R) solid tumors carry a dismal prognosis, and postrelapse patient experiences are not well described. We present postrelapse outcomes, including number of R/R events and subsequent therapy regimens.
Matthew T. McEvoy   +5 more
wiley   +1 more source

Prediction of Myasthenia Gravis Worsening: A Machine Learning Algorithm Using Wearables and Patient‐Reported Measures

open access: yesAnnals of Clinical and Translational Neurology, EarlyView.
ABSTRACT Background Myasthenia gravis (MG) is a rare disorder characterized by fluctuating muscle weakness with potential life‐threatening crises. Timely interventions may be delayed by limited access to care and fragmented documentation. Our objective was to develop predictive algorithms for MG deterioration using multimodal telemedicine data ...
Maike Stein   +7 more
wiley   +1 more source

Cognitive Status in People With Epilepsy in the Republic of Guinea: A Prospective, Case–Control Study

open access: yesAnnals of Clinical and Translational Neurology, EarlyView.
ABSTRACT Objective People with epilepsy (PWE) may experience cognitive deficits but fail to undergo formal evaluation. This study compares cognitive status between PWE and healthy controls in the West African Republic of Guinea. Methods A cross‐sectional, case–control study was conducted in sequential recruitment phases (July 2024–July 2025) at Ignace ...
Maya L. Mastick   +14 more
wiley   +1 more source

Remote Monitoring in Myasthenia Gravis: Exploring Symptom Variability

open access: yesAnnals of Clinical and Translational Neurology, EarlyView.
ABSTRACT Background Myasthenia gravis (MG) is a rare, autoimmune disorder characterized by fluctuating muscle weakness and potential life‐threatening crises. While continuous specialized care is essential, access barriers often delay timely interventions. To address this, we developed MyaLink, a telemedical platform for MG patients.
Maike Stein   +13 more
wiley   +1 more source

Applying an Ethical Lens to the Treatment of People With Multiple Sclerosis

open access: yesAnnals of Clinical and Translational Neurology, EarlyView.
ABSTRACT The practice of neurology requires an understanding of clinical ethics for decision‐making. In multiple sclerosis (MS) care, there are a wide range of ethical considerations that may arise. These involve shared decision‐making around selection of a disease‐modifying therapy (DMT), risks and benefits of well‐studied medications in comparison to
Methma Udawatta, Farrah J. Mateen
wiley   +1 more source

Clinical Outcomes of Patients Within the Rheumatoid Arthritis Care Pathway Cohort at a Tertiary Care Integrated Delivery Network: A Comparison to Usual Care

open access: yesArthritis Care &Research, EarlyView.
Objective We aimed to compare clinical outcomes between patients in the Allegheny Health Network rheumatoid arthritis (RA) care pathway and patients receiving usual care. Methods The care pathway initiative implements guideline‐based best practice alongside multidisciplinary team‐based care.
Tarun Sharma   +7 more
wiley   +1 more source

Sex Differences in Medication Discontinuation in Axial Spondyloarthritis

open access: yesArthritis Care &Research, EarlyView.
Objective We examined sex differences in medication discontinuation among patients with axial spondyloarthritis (axSpA) initiating tumor necrosis factor inhibitors (TNFi), interleukin‐17 inhibitors (IL‐17i), or JAK inhibitors (JAKi). Methods Using data from the Rheumatology Informatics System for Effectiveness (RISE) Registry (2003–2025), we assessed ...
Rachael Stovall   +9 more
wiley   +1 more source

Addressing Economic Insecurities Can Improve Patient‐Reported Outcomes in Lupus

open access: yesArthritis Care &Research, EarlyView.
Objective Economic insecurities, such as food, housing, transportation, and financial challenges, are modifiable risk factors and influence patient‐reported outcomes (PROs) in systemic lupus erythematosus (SLE). We examined the following: (1) associations between economic insecurities and PROs, and (2) the impact of screening and addressing economic ...
Jay Patel   +8 more
wiley   +1 more source

Formal and informal social care in people with Rheumatic and Musculoskeletal diseases: a cross‐sectional multicentre survey

open access: yesArthritis Care &Research, Accepted Article.
Introduction Rheumatic and musculoskeletal diseases(RMDs) are leading causes of physical disability, necessitating support with activities of daily living(ADLs). This study describes social care received by patients with RMDs in two disperate regions of England: Salford(urban) and Norfolk(rural).
Mehreen Somro   +6 more
wiley   +1 more source

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