Integrated in a multiphase development project, the Care Expert is a prototype of a novel e-supportive system aiming to mediate person-centered care in the context of outpatient oncology. At this early stage of development, the current study was conducted aiming at exploring the person-centeredness concept underlying the Care Expert version 1.0 and its usability for patients receiving outpatient chemotherapy for breast cancer. Within a user-centered design, we followed a mixed-methods approach entailing subjective assessment and diagnostic evaluation of the prototype. Four women undergoing outpatient chemotherapy participated in individual sessions and rated highly the system's usability. Their accounts led to identifying three supportive functions: continuous communication, reinforcement of self-driven agency, and cooperative agency with a sense of being looked after. We discuss the results in relation to theoretical fields that might guide further the development of the supportive system and usability recommendations. Care Expert has the potential to mediate person-centered care in outpatient oncology. Nevertheless, additional cycles of iterative development with the software team and of participatory design focusing on oncology nurses' perspectives are required before departing to the feasibility phase in intervention research.
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http://dx.doi.org/10.1097/CIN.0000000000000225 | DOI Listing |
Front Pharmacol
December 2024
Syreon Research Institute, Budapest, Hungary.
Background: Non-adherence to medication remains a persistent and significant challenge, with profound implications for patient outcomes and the long-term sustainability of healthcare systems. Two decades ago, the World Health Organization (WHO) dedicated its seminal report to adherence to long-term therapies, catalysing notable changes that advanced both research and practice in medication adherence. The aim of this paper was to identify the most important progress made over the last 2 decades in medication adherence management and to initiate a discussion on future objectives, suggesting priority targets for the next 20 years.
View Article and Find Full Text PDFFront Pediatr
December 2024
Paediatrics and Paediatric Respirology, National Heart and Lung Institute, Faculty of Medicine, Imperial College London, London, United Kingdom.
Ataxia-telangiectasia (A-T) is an ultrarare autosomal recessive disorder and occurs in all racial and ethnic backgrounds. Clinically, children and young people with A-T are affected by sinopulmonary infections, neurological deterioration with concomitant bulbar dysfunction, increased sensitivity to ionizing radiation, immunodeficiency, a decline in lung function, chronic liver disease, endocrine abnormalities, cutaneous and deep-organ granulomatosis, and early death. Pulmonary complications become more frequent in the second decade of life and are a leading cause of death in individuals with A-T.
View Article and Find Full Text PDFDelays in getting injured patients to hospital in a timely manner can increase avoidable death and disability. Like many low- or middle-income countries (LMICs), Rwanda experiences delays related to lack of efficient prehospital communication and formal guidelines to triage patients for hospital care. This paper describes the protocol to develop, roll out, and evaluate the effectiveness of a Destination Decision Support Algorithm (DDSA) integrated in an electronic communication platform, '912Rwanda'.
View Article and Find Full Text PDFFront Oncol
December 2024
Department of Pediatric Hematology-Oncology and Blood & Marrow Transplant, Cleveland Clinic, Cleveland, OH, United States.
Pediatric diffuse midline glioma (DMG), including diffuse intrinsic pontine glioma (DIPG), are aggressive brainstem tumors with a dire prognosis, traditionally diagnosed based on MRI characteristics. The recognition that molecular characteristics may determine prognosis and response to therapy has led to a reevaluation of biopsy necessity. This comprehensive review addresses the evolving role of brainstem biopsies in diagnosing and managing these tumors - both within the context of a clinical trial and in routine clinical care.
View Article and Find Full Text PDFJ Korean Med Sci
January 2025
Department of Laboratory Medicine, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Korea.
Background: The accuracy of Logical Observation Identifiers Names and Codes (LOINC) mappings is reportedly low, and the LOINC codes used for research purposes in Korea have not been validated for accuracy or usability. Our study aimed to evaluate the discrepancies and similarities in interoperability using existing LOINC mappings in actual patient care settings.
Methods: We collected data on local test codes and their corresponding LOINC mappings from seven university hospitals.
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