Introduction: Online communities contain a wealth of information containing unsolicited patient experiences that may go beyond what is captured by guided surveys or patient-reported outcome (PRO) instruments used in clinical settings. This study described patient experiences reported online to better understand the day-to-day disease burden of ankylosing spondylitis (AS).
Methods: Unguided, English-language patient narratives reported between January 2010 and May 2016 were collected from 52 online sources (e.g., general/health social networking sites, patient-physician Q&A sites, AS forums). Using natural language processing combined with manual curation, patient-reported experiences within narratives were evaluated and categorized into social, physical, emotional, cognitive, and role activity (SPEC-R) concepts to assess functional impairment. The same SPEC-R categorization was applied to 5 AS-specific PRO instruments to evaluate their coverage of concepts extracted from patient narratives.
Results: A total of 34,780 narratives from 3449 patients with AS were included. Physical aspects of AS (e.g., pain and mobility) were most commonly reported by patients (86.7%), followed by emotional (32.5%), cognitive (23.6%), role activity (8.7%) and social (5.1%). Some frequently discussed subconcepts were effectively captured by ≥ 2 PRO instruments, such as pain (65.3%), asthenia (19.9%), musculoskeletal impairment (19.9%), depression (9.9%), and anger/frustration (5.4%); others [e.g., anxiety (19.1%), mental impairment (3.2%), impulsivity (2.9%)] were not addressed by any of the PRO instruments.
Conclusion: These findings highlight the importance of analyzing patient experiences beyond clinical trial settings and physician reports; continuous assessment of existing PRO instruments in collaboration with patients may increase their utility in real-world settings.
Funding: Novartis Pharmaceuticals Corporation.
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http://dx.doi.org/10.1007/s12325-018-0669-1 | DOI Listing |
ACS Sens
January 2025
Sensor Engineering Department, Faculty of Science and Engineering, Maastricht University, P.O. Box 616, 6200 MDMaastricht, The Netherlands.
Malaria is a major public healthcare concern worldwide, representing a leading cause of death in specific regions. The gold standard for diagnosis is microscopic analysis, but this requires a laboratory setting, trained staff, and infrastructure and is therefore typically slow and dependent on the experience of the technician. This study introduces, for the first time, a biomimetic sensing platform for the direct detection of the disease.
View Article and Find Full Text PDFPract Radiat Oncol
January 2025
Department of Radiation Oncology, Christiana Care, Helen F. Graham Cancer Center & Research Institute, Newark, Delaware.
Superficial lesions of the face are often treated with an electron beam and surface collimation utilizing a conformal lead shield with an opening around the region of treatment (ROT). To fabricate the lead shield, an imprint of the patient face is needed. Historically, this was achieved using a laborious and time-consuming process that involved a gypsum imprinted model (GIM) of the patient topography.
View Article and Find Full Text PDFJACC Clin Electrophysiol
January 2025
Section of Cardiac Pacing and Electrophysiology, Division of Cardiology, Cleveland Clinic, Cleveland, Ohio, USA.
Background: In patients with mechanical aortic and mitral valves requiring catheter ablation of ventricular tachycardia (VT), a technique for access from the right atrium (RA) to the left ventricle (LV) via puncture of the inferoseptal process of the LV was previously described in a single-center series.
Objectives: This study sought to report the multicenter experience of VT ablation using this novel LV access approach.
Methods: We assembled a multicenter registry of patients with double mechanical valves who underwent VT ablation with RA-to-LV access.
JACC Heart Fail
January 2025
Division of Cardiology, CardioVascular Center, Tufts Medical Center, Boston, Massachusetts, USA; Department of Cardiovascular Medicine, Heart, Vascular, and Thoracic Institute, Cleveland Clinic, Cleveland, Ohio, USA. Electronic address:
J Perianesth Nurs
January 2025
Division of Abdominal Transplantation, Carolinas Medical Center, Wake Forest University School of Medicine, Atrium Health, Charlotte, NC.
Purpose: Understanding barriers to compliance can aid in mitigation strategies to address them. This study aims to quantitatively and qualitatively assess the relationship between barriers to ERAS recommendations and perceived ability to assure compliance among multidisciplinary team (MDT) members who deliver Enhanced Recovery After Surgery (ERAS) care.
Design: Embedded mixed-methods survey analysis.
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