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Characteristics of refractory disease and persistent symptoms in inflammatory arthritis: Qualitative framework analysis of interviews with patients and health care professionals.
Br J Health Psychol
February 2025
Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
Objectives: This study aims to explore patients' and clinicians' understanding and experiences of refractory disease (RD) and persistent physical and emotional symptoms (PPES) in patients with inflammatory arthritis (IA), namely rheumatoid arthritis or polyarticular juvenile idiopathic arthritis from their perspectives through interviews and/or focus groups.
Design: A qualitative study was conducted, following a pragmatic epistemology approach with framework analysis employed.
Methods: Semi-structured interviews or focus groups with IA patients (n = 25) and multi-disciplinary rheumatology HCPs (n = 32) were conducted at one time point to obtain participants respective understanding and experiences of managing RD/PPES, and its impact on the patient-professional relationship.
A Feasibility Study of a Controlled Standing Fulcrum Side-Bending Test in Adolescent Idiopathic Scoliosis.
J Clin Med
December 2024
Department of Materials and Production, Aalborg University, 9220 Aalborg, Denmark.
: Spinal flexibility radiographs are important in adolescent idiopathic scoliosis (AIS) for clinical decision-making. In this study, we introduce a new method, the 'quantitatively controlled standing fulcrum side-bending' test (CSFS test). This is a feasibility study; we aimed to quantify the applied force and track the temporospatial changes in the spine specifically by measuring the continuous change in the Cobb angle (in degrees) during lateral bending.
View Article and Find Full Text PDFTwo-year follow-up of gait and postural control following initiation of recombinant human tripeptidyl intracerebroventricular enzyme replacement therapy in two atypical CLN2 patients.
Sci Rep
January 2025
Division of Metabolic Disorders, CHOC Children's Hospital, Orange, CA, 92868, USA.
Neuronal ceroid lipofuscinosis type 2 (CLN2) is a rapidly progressive neurodegenerative disorder leading to premature mortality. Ambulatory CLN2 patients typically receive standard of care treatment through biweekly intracerebroventricular (ICV) enzyme replacement therapy (ERT) involving recombinant human tripeptidyl peptidase 1, known as cerliponase alfa (Brineura, Biomarin Pharmaceuticals). This study longitudinally assessed the impact of ICV cerliponase alfa ERT on gait, and postural control across a two-year span in two siblings diagnosed with atypical CLN2 disease.
View Article and Find Full Text PDFBackground: Axial Spondyloarthritis (axSpA) is a chronic inflammatory rheumatic condition affecting the axial skeleton, leading to pain, stiffness, and fatigue. While biologic therapies have improved clinical management, many patients experience partial or no responses, resulting in delays in disease control. Additionally, the risk of adverse events and increased costs remains a concern.
View Article and Find Full Text PDFMyelitis associated with glial fibrillary acidic protein IgG: characterization and comparison with aquaporin-4 IgG and myelin oligodendrocyte glycoprotein IgG myelitis.
BMC Neurol
January 2025
Department of Neurology, The First Affiliated Hospital of Zhengzhou University, 1 East Jianshe Road, Zhengzhou, China.
Background: Awareness of the characteristics of glial fibrillary acidic protein autoantibody (GFAP-IgG) associated myelitis facilitates early diagnosis and treatment. We explored features in GFAP-IgG myelitis and compared them with those in myelitis associated with aquaporin-4 IgG (AQP4-IgG) and myelin oligodendrocyte glycoprotein IgG (MOG-IgG).
Methods: We retrospectively reviewed data from patients with GFAP-IgG myelitis at the First Affiliated Hospital of Zhengzhou University and Henan Children's Hospital from May 2018 to May 2023.
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